tag:blogger.com,1999:blog-45451636320972460472024-03-14T09:41:50.534-07:00APS Support UK NewsKeep up-to-date with the latest news, events and campaigns from APS Support UK APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-4545163632097246047.post-92207989714541674752019-09-04T04:49:00.000-07:002019-09-04T04:49:18.558-07:00Medicines Discovery Catapult<br />
<span style="font-family: Arial, Helvetica, sans-serif;">We have published a blog about APS after being approached by the government initiative, Medicines Discovery Catapult.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">The idea is to promote <a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/antiphospholipid?source=feed_text&epa=HASHTAG&__xts__%5B0%5D=68.ARD9rUDX-awsCySlDeHjmGQDi7G8ESvn5ddJ2Hnz3T97KVitm4PP3JOMbqM4m8pkG8HwVGr3mWKoa5kzVWMMaKR5hhYOKx15IuS_qLqRQO6nhUkp24hNtPgDDOIx8AYiegIM2ZihhmztrbrxBAUrLQQHg8am4PS90zXCZ-N-mZNQdR4D1Ch55frn27960Edr46IaicCNFWIiSrmc2NY8s-H7oa44HBk0iXV39rEc_P1Cm-Nc9fh_VOhSvYfz2C6dRIOo80j2IT9wyfyfmqwikc_BXngXy2wl6Zw_YNZxan_5dLehFEuy0JHAGFtXXVynrjHaQ8nwZHA_fmM&__tn__=%2ANK-R"><span class="_5afx"><span aria-label="hashtag" class="_58cl _5afz"></span><span class="_58cm">antiphospholipid</span></span></a> syndrome (<a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/aps?source=feed_text&epa=HASHTAG&__xts__%5B0%5D=68.ARD9rUDX-awsCySlDeHjmGQDi7G8ESvn5ddJ2Hnz3T97KVitm4PP3JOMbqM4m8pkG8HwVGr3mWKoa5kzVWMMaKR5hhYOKx15IuS_qLqRQO6nhUkp24hNtPgDDOIx8AYiegIM2ZihhmztrbrxBAUrLQQHg8am4PS90zXCZ-N-mZNQdR4D1Ch55frn27960Edr46IaicCNFWIiSrmc2NY8s-H7oa44HBk0iXV39rEc_P1Cm-Nc9fh_VOhSvYfz2C6dRIOo80j2IT9wyfyfmqwikc_BXngXy2wl6Zw_YNZxan_5dLehFEuy0JHAGFtXXVynrjHaQ8nwZHA_fmM&__tn__=%2ANK-R"><span class="_5afx"><span aria-label="hashtag" class="_58cl _5afz"></span><span class="_58cm">APS</span></span></a>) to researchers and scientists in the pharmaceutical and biotech industries.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">
It has given us the opportunity to alert the drug industry to APS and
how important new medication is for patients.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;"><a href="https://md.catapult.org.uk/what-is-antiphospholipid-syndrome-aps/" target="_blank">https://md.catapult.org.uk/what-is-antiphospholipid-syndrome-aps/ </a></span><br />
<br />
APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-59310181972513179822019-07-03T02:22:00.002-07:002019-07-03T03:18:07.512-07:00Anticoagulant Clexane batches are recalled by MHRA<span style="font-family: "arial" , "helvetica" , sans-serif;">The UK Medicines and Healthcare products Regulatory Agency (MHRA) advises patients to check if they have certain batches of the prescription-only medicine Clexane as they are being recalled.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">As
a precautionary measure, patients taking certain types of the
prescription-only medicine Clexane for blood clots are asked to check to
see if they have products from batches of medicines which are being
recalled.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">If patients have any of these affected products, they should
continue taking their medicines and contact their GP practice to arrange
a new prescription. Once they have a new prescription, patients should
return the affected batches to their pharmacist. </span><br />
<br />
<br />
<section class="page-content">
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Patients can check their medicines by looking for the affected batch numbers on <a href="https://www.bnsgroup.co.uk/index.do" target="_blank">B & S Healthcare labelled packs</a>. The affected medicines are in the original Italian packaging with the UK manufacturer’s, <a href="https://www.bnsgroup.co.uk/index.do" target="_blank">B & S Healthcare</a>, label. This recall relates only to <a href="https://www.bnsgroup.co.uk/index.do" target="_blank">B & S Healthcare</a> labelled products.</span><br />
<br /></div>
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</section><span style="font-family: "arial" , "helvetica" , sans-serif;">
To check if you medication is affected, please visit the <a href="https://www.bnsgroup.co.uk/index.do" target="_blank">B & S Healthcare</a> website and download the <b></b><a href="https://www.bnsgroup.co.uk/images/BSHealthcare-Class2recallforfalsifiedmedicineMDR123-0519.pdf" target="_blank">inform</a></span><span style="font-family: "arial" , "helvetica" , sans-serif;"></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.bnsgroup.co.uk/images/BSHealthcare-Class2recallforfalsifiedmedicineMDR123-0519.pdf" target="_blank">ation pack</a>. </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Click to read the full <a href="https://www.gov.uk/government/news/patients-to-check-if-they-have-prescription-only-medicines-being-recalled" target="_blank">MHRA bulletin</a>. </span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-37572921814020060682019-06-27T02:57:00.005-07:002019-06-27T06:22:13.383-07:00Direct oral anticoagulants and APS<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;"><span style="color: #002060;">The UK Medicines and Healthcare
products Regulatory Agency (MHRA) has recently issued advice concerning
use of direct oral anticoagulants (DOACs) in patients with APS. This advice may result in warfarin being
preferred to DOACs for patients with APS until more evidence is available.</span> </span></span><br />
<div class="MsoNormal">
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The chief aim of drug treatment
in patients with APS is to prevent blood clots or strokes.<span style="color: #002060;"><span style="color: #002060;"> </span></span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;"><span style="color: #002060;">The main drug used for many
years has been warfarin, which thins the blood. There is good evidence from
clinical trials that warfarin is effective in preventing clots in patients with
APS.</span></span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;"><span style="color: #002060;"><span style="color: #002060;">There are some disadvantages to
using warfarin. Patients have to have regular blood tests (called <a href="http://aps-support.org.uk/self-help/inr-and-self-testing" target="_blank">INR tests</a>) to
make sure that the level of thinning of the blood is at just the right level –
if the dose of warfarin is too high there is an increased risk of bleeding.
Furthermore, warfarin interacts with a number of other medications so that when those
drugs are being taken the INR tests may need to be done more frequently.</span> </span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;"><span style="color: #002060;">Due to these issues with
warfarin a new generation of blood-thinning drugs has been developed. These
drugs are called Direct Oral Anticoagulants or DOACs and examples include
rivaroxaban, apixaban and dabigatran. Their effect on blood thinning is more
predictable and easier to control, so patients on these drugs do not require
regular INR tests. It has also been suggested that these drugs have fewer
interactions with other drugs than warfarin does.</span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;"><span style="color: #002060;">The DOACs have been used to
prevent clots in a number of other medical conditions and clinical trials have
shown that they work as well as warfarin in those conditions. For this reason,
some patients with APS have had their treatment changed from warfarin to DOACs.</span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;"><span style="color: #002060;">The UK Medicines and Healthcare
products Regulatory Agency (MHRA) has recently issued advice concerning
use of DOACs in patients with APS. This advice may result in warfarin being
preferred to DOACs for patients with APS until more evidence is available.</span></span></span><br />
<br />
<span style="color: #002060;"><span style="color: #002060;"><span style="color: #002060;">A number of medical specialist
and patient groups in the UK are currently discussing this advice and we will
be posting the outcome of those discussions when it is available.</span> </span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;"><span style="color: #002060;">In the meantime APS
Support UK's advice to patients is as follows:</span></span></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;">
</span></span>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;"><br /></span></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;">
- If you are taking warfarin, carry on with your treatment as normal. </span></span><br />
<span style="color: #002060;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #002060;"><br /></span></span></span></span>
<span style="color: #002060;"><span style="font-family: "arial" , "helvetica" , sans-serif;">- If you are already taking a DOAC <b>do not stop taking it until you have started an alternative blood-thinning agent such as warfarin</b>.
Remember that the highest risk of having a clot would be to take no blood-thinning agent at all. Your GP should not stop your DOAC without discussing it with your haematologist and local anticoagulation clinic first. </span></span><br />
<div class="MsoListParagraph" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span style="color: #002060;"><br /></span>
<span style="color: #002060;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">- I<span style="font-family: "arial" , "helvetica" , sans-serif;">f you are changed from a DOAC to warfarin you will need to start having regular INR blood tests and</span></span></span></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-list: Ignore;"><span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-optical-sizing: auto; font-size-adjust: none; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-variation-settings: normal; font-weight: normal; line-height: normal;">
</span><span span="" style="color: #002060;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">may need to take heparin injections until the warfarin starts to work
and you reach your INR target range.</span></span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-list: Ignore;"><span span="" style="color: #002060;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;"> For more information, please visit the MHRA's website: https://www.gov.uk/drug-safety-update/direct-acting-oral-anticoagulants-doacs-increased-risk-of-recurrent-thrombotic-events-in-patients-with-antiphospholipid-syndrome </span></span></span></span></div>
APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-36894125652568352692019-04-29T03:28:00.001-07:002019-04-29T03:28:45.662-07:0016th International APS Congress - Patients' Conference 20th September 2019<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">The <span class="MsoHyperlink"><a href="http://icapaconference.com/">16<sup>th </sup>APS International Congress</a></span>
is being held in the UK - at <span class="MsoHyperlink"><a href="http://icapaconference.com/the-venue/">Manchester Central</a></span> from
17<sup>th</sup>-20<sup>th</sup> September 2019.</span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">This important global APS Congress is held every three years,
and attracts around 400 researchers and specialists who discuss the recent
advances and future directions in the field of APS.</span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">On Friday 20<sup>th</sup> September, there is a unique
opportunity for patients to attend an all-day event with a Patient Education
Session in the morning and Joint Patient Session in the afternoon, both hosted
by world-renowned APS experts.</span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">The cost is £42 per ticket and this includes: </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<ul>
<li><span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-list: Ignore;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-optical-sizing: auto; font-size-adjust: none; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-variation-settings: normal; font-weight: normal; line-height: normal;">
</span></span>Access to both patient congress sessions <br /></span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-list: Ignore;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-optical-sizing: auto; font-size-adjust: none; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-variation-settings: normal; font-weight: normal; line-height: normal;">
</span></span>Access to the exhibition and posters<br /></span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-list: Ignore;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-optical-sizing: auto; font-size-adjust: none; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-variation-settings: normal; font-weight: normal; line-height: normal;">
</span></span>Congress materials<br /></span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-list: Ignore;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-optical-sizing: auto; font-size-adjust: none; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-variation-settings: normal; font-weight: normal; line-height: normal;">
</span></span>Tea, coffee breaks and lunch<br /></span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-list: Ignore;">·<span style="font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-optical-sizing: auto; font-size-adjust: none; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-variation-settings: normal; font-weight: normal; line-height: normal;">
</span></span>Complimentary Wi-Fi</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span></li>
</ul>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">Specialists will talk on a number of APS topics in the
morning based on an agenda set by patients. In the afternoon, there will be
patient speakers and the opportunity for discussion and questions; in
particular, scientists would like to learn from the patients about unmet needs
so they can prioritise future APS research.</span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">To book your place please visit the <span class="MsoHyperlink"><a href="https://confpartners.eventsair.com/icapa-2019/patient-reg">APS Congress Patient
Registration page</a></span>. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-41928928255930437802019-02-25T06:26:00.000-08:002019-02-25T06:26:37.421-08:00APS Support UK Research Fund<h1>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: black; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-themecolor: text1;">We are now offering small grants
of up to £5,000 for</span><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> research projects specifically concentrating on antiphospholipid
syndrome.</span> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">APS Support UK, is a grant making charity
recognised by the National Institute for Health Research (NIHR) as a
non-commercial partner funding research of clear value to the NHS as a result
of open competition with high quality peer review.<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> </span></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> </span></span></div>
<br />
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Applications will be considered for:</span></span></div>
<ul type="disc">
<li class="MsoNormal" style="mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Smaller pilot studies which will lead to
applications to major funders for large-scale research trials<br style="mso-special-character: line-break;" />
<br style="mso-special-character: line-break;" />
</span></span></li>
<li class="MsoNormal" style="mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Enabling grants for basic science support that
would enable larger projects by providing essential data for large grant
applications<br style="mso-special-character: line-break;" />
<br style="mso-special-character: line-break;" />
</span></span></li>
<li class="MsoNormal" style="mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Support for organising medical meetings that
would facilitate improvements to the understanding of the causes,
prevention and treatment of APS, and its research (NB maximum grant £1000)<br style="mso-special-character: line-break;" />
<br style="mso-special-character: line-break;" />
</span></span></li>
<li class="MsoNormal" style="mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list 36.0pt;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Travel awards to enable scientists or
clinicians in training to attend national or international meetings to
present their own research. The maximum award will be £1000 and we will
require a letter from the applicant’s supervisor confirming that they are
in training, and proof that their research has been accepted for
presentation</span></span></li>
</ul>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">APS Support UK is
willing to work collaboratively with other charities where research interests
overlap.</span></span></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<br /></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-GB;">Please read the <a href="http://aps-support.org.uk/about-aps-support/research" target="_blank">research section</a> on our website for more information.<span class="MsoHyperlink"></span></span></span><span style="font-family: Arial, Helvetica, sans-serif;"></span><span style="font-family: Arial, Helvetica, sans-serif;"></span></div>
<br />
<br /><span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-2282749455498035572018-10-16T03:40:00.002-07:002018-10-16T03:41:51.040-07:00World Thrombosis Day 2018<span style="font-family: "arial" , "helvetica" , sans-serif;">Four APS organisations joined forces to raise awareness of antiphospholipid syndrome for World Thrombosis Day 13th October 2018.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Together with APS-ACTION, the APS Foundation of America and the APS Foundation of Australia we ran a collaborative campaign to increase awareness of APS in the thrombosis community and beyond.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">To read more about the APS campaign, please read our <a href="http://aps-support.org.uk/files/8/World%20Thrombosis%20Day%20lealfet_digital.pdf" target="_blank">World Thrombosis Day</a> leaflet.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">During the campaign we asked that patients write in with questions that would be answered by members of APS-ACTION. You can read this <a href="http://apsaction.com/wp-content/uploads/2018/10/WTD-Campaign-QA.pdf" target="_blank">patient questions and answers here</a>.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Thank you so much to everyone who contributed to the <a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/wtday18?source=feed_text&__xts__%5B0%5D=68.ARCQgjv5HovCTtrasG9IiiqEaksX2qKGnRerdpnAWYG6OYCv7U-hr6XjNGUjQ33vsm8tLkJVvuZseKZso5N5fdPODk97mtZtU-0stByMxpTbnQZ786izwQj2vSS0lg5UWUoq3liLxLo3kmFKwabfseg6LRacFfPRUXYRywwrhbQa9zd87VJRBsKY80MlJ3UL6KbQwk_pyUZGGK4uczMTIuCLQqk&__tn__=%2ANK-R"><span class="_5afx"><span class="_58cl _5afz">#</span><span class="_58cm">WTDay18</span></span></a> APS Support Campaign. </span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-43661333710708530762018-05-08T05:13:00.000-07:002018-05-08T05:13:12.194-07:00Important information for patients taking hydroxychloroquine<span style="font-family: Arial, Helvetica, sans-serif;">If you are an APS patient who regularly takes hydroxychloroquine (trade names Plaquenil and Quinoric in the UK), please be aware that the Royal College of Ophthalmologists (RCO) have updated their guidelines regarding eye testing. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">This is because recent studies have shown that hydroxychloroquine retinopathy is more common than previously reported – around 7 in every 100 patients - especially with long-term use over five years or heavy doses. The risk is much higher in patients who have been taking the drug for 20 years or more: in these patients, between 20-50 out of 100 will develop retinopathy. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">This type of retinopathy, also known as ‘bull’s eye maculopathy’, damages the retina and symptoms can include partial colour-blindness, loss of fine detail, blurring or distortion, night blindness and permanent central vision loss. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Therefore, the RCO now recommends that all patients who take hydroxychloroquine for longer than five years should be referred by their GP, or APS specialist, for a yearly test at a hospital eye clinic. </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">The screening will be comprehensive and your pupils will be dilated with eye drops – for the technical information involved, please read the RCO’s guidelines: </span><br />
<br />
<a href="https://www.rcophth.ac.uk/wp-content/uploads/2018/03/Hydroxychloroquine-and-Chloroquine-Retinopathy-Screening-Guideline-and-Recommendations.pdf"><span style="font-family: Arial, Helvetica, sans-serif;">https://www.rcophth.ac.uk/wp-content/uploads/2018/03/Hydroxychloroquine-and-Chloroquine-Retinopathy-Screening-Guideline-and-Recommendations.pdf</span></a><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">There is also a very useful leaflet produced by the Macular Society that you may find helpful: </span><br />
<br />
<a href="https://www.macularsociety.org/sites/default/files/resource/Hydroxychloroquine%20-%20access_0.pdf" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif;">https://www.macularsociety.org/sites/default/files/resource/Hydroxychloroquine%20-%20access_0.pdf </span></a>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com1tag:blogger.com,1999:blog-4545163632097246047.post-39737302960239636212018-04-29T09:22:00.001-07:002018-04-29T09:22:59.606-07:00A new awarding winning iBook about antiphospholipid syndrome is now available to download for free.<p>The product of a collaborative project between the Hospital for Special Surgery, New York, NY, USA and Nancy-Lorraine University, Nancy, France. The authors - Laurent Phialy, Stephane Zuily and Doruk Erkan - developed this digital book with the main aim of helping medical students better understand the spectrum of antiphospholipid antibody (aPL)-related clinical problems, and to help educate them in the diagnosis and management of APS.</p>
<p>However, the APS iBook is proving popular with the medical community and patients alike, with one reviewer stating: "a must read for patients and doctors. It's written in a clear and understandable and the international cooperation gives us all hope".</p>
<p>The APS iBook has <a href="http://www.ibooksauthorconference.com/" target="_blank">won two awards</a>: Best iBook of the Year, Education Category, Science Subcategory and One of the Three Best iBooks of the Year, All Categories.</p>
<p>Definitely worth a read! <a href="https://itunes.apple.com/us/book/antiphospholipid-syndrome/id1185542915?mt=11" target="_blank">Please click here to download your copy.</a></p>
<p>Note: This iBook is free to download with iBooks on your Mac or iOS device (multi-touch books can be read with iBooks on your Mac or iOS device). iBooks on your Mac requires OS X 10.9 or later.</p>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com2tag:blogger.com,1999:blog-4545163632097246047.post-81955753985014002602018-02-09T04:09:00.000-08:002018-02-20T03:21:16.270-08:00APS Support UK and LUPUS UK are jointly funding research into APS at University College London<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks to the efforts of our fundraising committee, the
<a href="http://www.lgfellowship.org/" target="_blank">Louise Gergel Fellowship</a><span class="MsoHyperlink">,</span> and matching funding from <a href="https://www.lupusuk.org.uk/" target="_blank">LUPUS UK</a> the charity has been able to support a year-long APS research project at University College London (UCL) carried out by Dr Vera Ripoll-Nunez.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Dr Ripoll-Nunez started her career in Colombia working at the Institute of Immunology, focussing on malaria which is the leading cause of death in Colombia. During this time, she developed a passion to forge a career in immunology and worked in Australia and the UK.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">She has been working at UCL since 2011, and played a key role in the 2010-2016 research programme funded by Arthritis Research UK that looked into the causes of APS.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Her new project builds on this earlier research and will look at a new biological target in the treatment of APS: an important process called autophagy in which the body’s cells renew themselves.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Dr Ripoll-Nunez is aiming to prove that a malfunction in autophagy leads the immune system to attack the body itself causing symptoms of APS, and she has already obtained promising results indicating that APS-derived antibodies act to reduce autophagy.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">She says: “With the Louise Gergel Fellowship, I propose to build on the exciting results generated from my previous research at UCL”.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Autophagy is a hot topic in scientific research at the moment, and the 2016 Nobel Prize in Medicine was awarded for work on the subject. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">One of the available drugs that act on autophagy, sirolimus,has been the subject of a <a href="http://www.nejm.org/doi/pdf/10.1056/NEJMoa1312890" target="_blank">study</a> looking at kidney transplants in patients with APS and the UCL research team believe that pursuing the investigation of autophagy in APS could potentially help patients in the future.</span>
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<br />APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-62035049571040703152017-09-14T07:04:00.000-07:002017-09-14T07:04:26.631-07:00New range of Christmas cards now available<span style="font-family: "arial" , "helvetica" , sans-serif;">Christmas is just around the corner again so please do consider supporting our charity if you’re
sending cards this year. </span>
<br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-bidi-font-family: Arial;">This is a great way
to raise awareness of APS among your family and friends, as
well as help sustain our charity.</span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-bidi-font-family: Arial;">Our 2017 Christmas
cards are now on sale </span><span style="mso-bidi-font-family: Arial;">on our <a href="http://www.aps-support.org.uk/get-involved/visit-our-shop.php#xmas" target="_blank">website</a></span><span style="mso-bidi-font-family: Arial;">. We have lots of designs and hope there is something for everyone's taste.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-bidi-font-family: Arial;">Please be aware that we have limited stock and
some designs sold out very quickly last year.</span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-bidi-font-family: Arial;">For those of you
who would prefer to make a donation in lieu of sending cards, please do so on
our </span><a href="https://www.charitycheckout.co.uk/1138116/christmas" target="_blank"><span style="mso-bidi-font-family: Arial;">secure Christmas
donation page</span></a><span style="mso-bidi-font-family: Arial;">.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="mso-bidi-font-family: Arial;">Thank you so much
for your valued support – together we are stronger.</span></span></div>
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APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-51674091375569116222017-09-01T06:53:00.000-07:002017-09-01T06:53:06.584-07:00James Lind Alliance: priority for research into miscarriage<div class="subsection" id="sec-2">
<div class="subsection" id="sec-6">
<span style="font-family: Arial,Helvetica,sans-serif;">Our charity was delighted to be invited to be a key stakeholder in the priority setting partnership organised by the James Lind Alliance.<b> </b></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif;">Traditionally, the research agenda has been set by the pharmaceutical
industry and researchers themselves, but little consideration
has been given to the priorities of women and their partners who have experienced
miscarriage. The James Lind Alliance (JLA) is a
non-profit initiative with the aim of making healthcare research funders
aware of these issues that matter most to patients. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">The process involved surveying 1093 participants (932 women who have
experienced miscarriage, 8 partners, 17 family members, friends or
colleagues, 104 healthcare professionals and 8 charitable
organisations) and identifying key stakeholder groups.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif;">From the survey questions, the 25 highest ranked were prioritised to a list of 10 at a final face-to-face workshop in which our charity participated. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">In summary,
the top 10 priorities were ranked as follows: </span><br />
<ul>
<li><span style="font-family: Arial,Helvetica,sans-serif;">research into preventative
treatment<br /></span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif;">emotional aspects in general<br /></span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif;">investigation and relevance of
pre-existing medical conditions<br /></span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif;">emotional support as a treatment<br /></span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif;">importance of lifestyle factors<br /></span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif;">importance of genetic and chromosomal
causes<br /></span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif;">preconception tests<br /></span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif;">investigation after different numbers of
miscarriage<br /></span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif;">male causal factors</span></li>
</ul>
<span style="font-family: Arial,Helvetica,sans-serif;">It was encouraging to note that antiphospholipid syndrome is now established as the most important
treatable cause of recurrent miscarriage, and we hope these results will help direct the focus of future miscarriage research so that women with obstetric APS have a more positive outlook.</span><br />
<br />
<div id="p-7">
To read the full paper, please <a href="http://bmjopen.bmj.com/content/7/8/e016571.full?ijkey=Ni7fon5akFtbclI&keytype=ref" target="_blank">click here</a>.</div>
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APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-54269968799658728032017-07-27T08:14:00.000-07:002017-07-27T08:15:26.463-07:00MIMS Learning Module now available<span style="font-family: "arial" , "helvetica" , sans-serif;">Keeping our focus this year on APS education for healthcare workers,
the MIMS Learning module for the diagnosis and management of
antiphospholipid syndrome is now available.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> Written by one of our
medical trustees, Professor Anisur Rahman, and Dr Salma Ahmed, a GP
from Tower Hamlets, the module takes an hour to complete and provides
1.00 learning credits. </span><br />
<br />
<div class="activityContentLinebott grid_row">
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<h4 class="overVTitle">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Educational Objectives</span></h4>
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<div class="activityContentOpen grid_row">
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span class="decript dsPadTop addTopMarg value">After reading this activity, healthcare professionals should be better able to: <br />
</span></span><br />
<br />
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span class="decript dsPadTop addTopMarg value">Recognise possible cases of antiphospholipid syndrome (APS)</span></span></li>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span class="decript dsPadTop addTopMarg value">
<li>Understand the results of blood tests for antiphospholipid antibodies</li>
<li>Manage APS in patients with previous thrombosis</li>
<li>Manage pregnancy in patients with APS </li>
</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="http://www.mimslearning.co.uk/antiphospholipid-syndrome-diagnosis-and-management/activity/4882/" target="_blank">http://www.mimslearning.co.uk/antiphospholipid-syndrome-diagnosis-and-management/activity/4882/ </a></span></div>
</div>
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<span class="text_exposed_show"></span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-55927294285186433482017-06-16T06:19:00.000-07:002017-06-16T06:22:44.814-07:00Places for the Manchester Half Marathon on Sunday 15th October 2017<span style="font-family: "arial" , "helvetica" , sans-serif;">The <a href="http://www.manchesterhalfmarathon.com/home/" target="_blank">Manchester Half Marathon</a> is being held on Sunday 15th October 2017.
<span style="color: #555555;"> </span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">This award winning half marathon is one of the
flattest courses so, if you only enter one half marathon this year, make it the Manchester
Half Marathon.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The route takes runners on wide, closed roads through Old Trafford,
Stretford, Brooklands and Sale, and the organisers are once again promising
plenty of entertainment and outstanding crowd support. It starts and
finishes at Emirates Old Trafford home of Lancashire County Cricket Club.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Registration is £25 and as places are limited we ask that you try to raise £150 sponsorship money if possible.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Please <a href="mailto:info@aps-support.org.uk" target="_blank">contact us</a> if you would like a guaranteed charity place. </span><br />
<br />
<br />APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-53297488020568338502017-06-09T03:41:00.003-07:002017-06-09T03:41:53.661-07:00The first World APS Day<span style="font-family: Arial,Helvetica,sans-serif;">9th June 2017 is World APS Day, the first global awareness campaign aimed at
raising awareness of antiphospholipid syndrome and its impact on patients' lives.</span><br />
<br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">World APS Day is a global awareness campaign aimed at raising understanding
of antiphospholipid syndrome, and its impact on patients’ lives.</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">APS is a global health problem, affecting people of all
nationalities, races, ethnicities, genders and ages, so we are working with other
charities and organisations around the world to shine the spotlight on this
under-recognised condition.</span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">We will be asking you to make some noise on World APS Day by
sharing infographics on social media to join in a single, united global voice.
Please support this initiative if you can.</span></span></div>
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
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<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
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<w:LsdException Locked="false" Priority="52"
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<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="51"
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<w:LsdException Locked="false" Priority="52"
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<![endif]-->APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com1tag:blogger.com,1999:blog-4545163632097246047.post-25350270190970646832017-06-08T04:24:00.004-07:002017-06-08T04:24:46.402-07:00GP online training course<span style="font-family: Arial,Helvetica,sans-serif;">Our charity is pleased to present the first Royal College of GPs eLearning course on antiphospholipid syndrome:
</span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;"><a href="http://elearning.rcgp.org.uk/aps">elearning.rcgp.org.uk/aps</a> </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">The charity funded the course which was developed by GPs working with our APS experts, under the guidance of the Royal College. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">The RCGP will host the course on their website for two years until March 2019. It takes 30 minutes to complete, is free to register and 0.5 Continuing Professional Developments points and a certificate will be awarded on successful completion. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">Naturally, we want to reach as many people as possible and the Royal College of GPs will promote the online course to its 52,000+ GP members, 9,000 GP Speciality Trainees and 30,000+ interested health practitioners, potentially reaching around 100,000 healthcare professionals. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">APS Support UK is aiming to promote the training module to every GP practice via the regional Clinical Commissioning Groups, NHS Wales, NHS Scotland and GP education boards. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">We are also asking for APS patients to help with this education campaign and have produced a <a href="http://www.aps-support.org.uk/resources/pdfs/APS-A5-flyer-GP-Training.pdf">GP flyer</a> that you can download and take along to your GP the next time you visit.</span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">Please do not make a specific appointment – they are busy people – or drop it into the surgery as it will probably end up in the bin! Just remember to take it along if you have reason to visit and ask your GP to take time to look at the APS online course and encourage practice partners to do the same. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">If you would like to receive some flyers by post, please <a href="mailto:info@aps-support.org.uk" target="_blank">contact us</a> and we'll get some sent out to you.
</span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-47617143739539136862017-04-05T07:01:00.001-07:002017-04-05T07:01:17.613-07:00Give your views on future research
<span style="font-family: Arial,Helvetica,sans-serif;">We have been asked to circulate the following explanation
and link to an online questionnaire by the research team at University College
London. </span><br />
<div class="MsoNormal">
<br /></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal">
<span style="font-family: Arial,Helvetica,sans-serif;">It’s slightly technical, but we <span style="mso-no-proof: yes;">would really appreciate it if you could take a few minutes to complete the
brief online survey so that they can learn about the type of research that is
important to you. </span></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"></span><div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;"><b style="mso-bidi-font-weight: normal;">How you can help influence a new research proposal <br /></b></span></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;">We are researchers at University
College London studying patients with lupus and antiphospholipid syndrome (APS)
to increase our understanding of what causes these diseases and so improve
their treatment. We have a new and exciting idea that we believe could improve
patient care and would like to get your thoughts on how important and relevant
it is to patients before we apply for research funding to study it.</span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;">We are interested in how certain
parts of the immune system (antibodies) interact with blood clotting
(coagulation) and inflammatory (complement) pathways to cause disease.</span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;">Antibodies are proteins that
normally bind to foreign substances, such as infections, and clear them from the
body. In autoimmune conditions such as lupus and APS, the immune system becomes
scrambled and produces (auto) antibodies which bind to the body’s own cells
causing damage. </span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;">We are very interested in one
particular autoantibody that binds to an enzyme called activated Factor (F)Xa.
This enzyme is an important part of the coagulation pathway that becomes
activated after injury to stop bleeding. It is also the target of new blood
thinning drugs that work by inhibiting FXa activity in patients with excessive
blood clots, such as rivaroxaban. FXa is also known to cause inflammation and
recent evidence has shown that it may occur through activation of complement
proteins. These proteins usually help the body to fight infection, but they are
also known to be important in lupus and APS. </span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;">No one has studied whether
anti-FXa antibodies alter FXa and complement activation in SLE and APS. We
think that being able to identify anti-FXa antibodies and knowing how they
interact with FXa and complement to cause disease would allow us to tailor
treatments for patients according to their blood results. So patients positive
for these autoantibodies may be suitable for treatment with anti-FXa drugs
because of their ability to block FXa induced complement activation, even in the
absence of a blood clot. Therefore, greater knowledge of how these antibodies
affect FXa and complement would help us understand the benefits of this
treatment. We also hope to develop new drugs to target these diseases. </span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;">However, before we apply for this
research we’d like to ask you some simple questions to check we are looking to
answer the questions that are most relevant to you. Please click on the link
below to answer these questions:</span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;"><a href="https://www.surveymonkey.co.uk/r/Q5VRKV8">https://www.surveymonkey.co.uk/r/Q5VRKV8</a></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;">
</span></div>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial,Helvetica,sans-serif;">All of us at the UCL APS research
group would like to extend a grateful thank you for your time and support in
answering these questions, it’s only together we can really make progress in
treating these diseases.</span></div>
APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-10558948894676621742017-03-07T01:45:00.003-08:002017-03-07T02:06:54.033-08:00Largest grant ever awarded for APS research in the UK<span style="font-family: "arial" , "helvetica" , sans-serif;">The Centre for Rheumatology at University College London has been awarded a £3.5 million grant from the Medical Research Council
to continue developing a new treatment for antiphospholipid syndrome (APS) the largest grant ever awarded in the UK for research into APS. The grant will
support the next three years' work on the project designed to develop the new agent to the point where trials in humans could start. </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The current treatment for patients with APS involves lifelong anticoagulant treatment, with drugs such as warfarin, but these are associated with a significant risk of bleeding. The new treatment being developed by UCL looks at suppressing the antibodies so that anticoagulation could be reduced for patients. </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> Professor Anisur Rahman, a Trustee and Medical Advisor to APS Support UK, is leading the team at UCL who are working in partnership with Abzena, a biotechnology company that provides specialist
chemical technology needed to develop this potential treatment. </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> Professor Rahman said: “This collaboration has been a team effort for the last decade. Working with an industrial partner has been a key feature of the project as both the academic
and industry partners provided complementary expertise and looked at the project from different viewpoints. In addition, we have a good relationship with patient groups particularly APS Support UK so we can obtain a good idea of what patients need from new therapies in this syndrome.” </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Needless to say, our charity is delighted that such a large grant has been awarded to further the research of APS. Our CEO, Lynne Kirwin, explained: “We welcome the award of this grant to this valuable research initiative. We have had the opportunity to work closely with UCL research team in recent years, providing feedback from patients on the therapies currently available
for APS. </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">“The possibility of a new treatment will undoubtedly give hope to patients and will be warmly welcomed by clinicians working in the field.” </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">For more information, please read the <a href="http://www.uclb.com/news-and-events/news-post/abzena-plc-and-ucl-medical-research-council-grant-awarded-to-collaboration-group-developing-novel-autoimmune-therapy" target="_blank">UCL press release</a>.
</span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-58343454543663196732017-02-14T04:33:00.003-08:002017-02-14T04:34:21.555-08:00Antiphospholipid antibodies disappearance in primary antiphospholipid syndrome<span style="font-family: "arial" , "helvetica" , sans-serif;">Research has been published looking at the controversy over negative
antiphospholipid antibody results in people who have been diagnosed with
primary APS at an earlier stage.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> The authors of this paper looked at patients who had clearly been positive for the blood tests and had a diagnosis of APS, but whose subsequent tests had been negative.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The study suggest that, in primary APS, persistent negative antiphospholipid antibody profile
is not an indication to interrupt oral anticoagulant therapy.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://cancerologyoncologysfakianakis.wordpress.com/2017/02/13/antiphospholipid-antibodies-disappearance-in-primary-antiphospholipid-syndrome-thrombosis-recurrence/">https://cancerologyoncologysfakianakis.wordpress.com/2017/02/13/antiphospholipid-antibodies-disappearance-in-primary-antiphospholipid-syndrome-thrombosis-recurrence/ </a></span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-53496431729954913602017-02-10T04:19:00.004-08:002017-02-10T04:19:45.938-08:00Festival volunteering opportunity<span style="font-family: Arial,Helvetica,sans-serif;">Thank you to the two anonymous (so far) people who nominated APS Support UK as their chosen charity when they volunteered with My Cause UK at the
Boomtown Fair last summer, earning us a donation of £100.</span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;"> My
Cause provides unique volunteering opportunities at music festivals and
events across the UK, allowing volunteers to raise funds for any charity
they choose in return for their time and effort. In return for the
time that a volunteer gives them, they make a donation on their b<span class="text_exposed_show">ehalf to their chosen charity.</span></span><br />
<br />
<div class="text_exposed_show">
<span style="font-family: Arial,Helvetica,sans-serif;">
So, if you're a festival go-oer and want to get involved, please have a look at their website:</span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;"><a href="http://mycauseuk.com/charity/aps-support-uk/" rel="nofollow" target="_blank">http://mycauseuk.com/charity/aps-support-uk/</a></span></div>
APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-12454719703707578232017-02-03T02:29:00.002-08:002017-02-03T02:29:20.253-08:00APS Specialists Directory<span style="font-family: Arial,Helvetica,sans-serif;">Thanks to all the patients who have recommended their APS
doctors to us and allowed us to produce the UK Specialists Directory. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">
We have maintained this unique directory for over four years now and,
thanks to information sharing, it has helped many APS patients
finally see a doctor who understands their condition.</span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;"> We have just added over eight new doctors this year alone and now have a list of almost 130 throughout the UK.</span><br />
<br />
<div class="text_exposed_show">
<span style="font-family: Arial,Helvetica,sans-serif;"> Please do let us know if your APS specialist is missing from the list and thanks again for making this possible.<span class="_47e3 _5mfr" title="smile emoticon"><span class="_7oe"></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span class="_47e3 _5mfr" title="smile emoticon"><span class="_7oe"> </span></span> </span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><a href="http://www.aps-support.org.uk/self-help/specialists-in-your-area.php" rel="nofollow" target="_blank">http://www.aps-support.org.uk/…/specialists-in-your-area.php</a></span></div>
APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-39464215992539149292017-01-31T02:35:00.001-08:002017-01-31T02:35:22.880-08:00PREGNANTS working group releases results of large study<span style="font-family: Arial,Helvetica,sans-serif;">The PREGNANTS working group, (PREGNancy in women with
ANTiphospholipid Syndrome), has just released the results of a large
study.</span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;"> The trial investigated 750 pregnancies in women with
primary APS looking at the outcomes associated with the different types
of antibodies - Lupus anticoagulant (LA), anticardiolipin (aCL) and the
anti-beta-glycoprotein1 (ab2GPI).</span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;"> They found that aCL is the most common antiphospholipid antibody present, but ab2GPI is the one associated with the low<span class="text_exposed_show">est
livebirth rate and highest incidence of pre-eclampsia, low weight
babies and stillbirth, compared to presence of aCL or LA alone.</span></span><br />
<br />
<div class="text_exposed_show">
<span style="font-family: Arial,Helvetica,sans-serif;"> This pivotal study will help guide research in the future, thanks to all those women who took part.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.ajog.org%2Farticle%2FS0002-9378%2817%2930148-5%2Ffulltext&h=ATNF75tp7BjH6iw80NbQJlY0T0ik2k1bkQDCGt0TlEi3QUHz2bES0i5yBbc84L30G30YGpEnZzylsScBxyXHEC5K_o6lUWnwWJYy0c1NM8e1ggXvLc_qmmn-7y6JZ4AI1YV5&enc=AZM0kRqa4xojBqDvodjTKvJTMidj3UPpzKbtYQGr5BC_fx7H1zUQ8vXLL8YTP_O165eX8HD7RezM3sGE-SaO9R5KfAh8dsm77CD2eSk4KjKSdyU2ZkWFA3T2rdrw9_2pBHJ7S4S3velNaXcLyvWaoH3Wbz8vXeeqESOCgUWTilkQyP2nR1IOJT78isviiK8sriwPp40dsJ-cIgWytoPmChhT&s=1" rel="nofollow" target="_blank">http://www.ajog.org/article/S0002-9378(17)30148-5/fulltext</a>…</span></div>
APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com1tag:blogger.com,1999:blog-4545163632097246047.post-34342703511940003342016-09-23T02:59:00.002-07:002016-09-23T02:59:34.313-07:00Christmas cards now on sale<span style="font-family: "arial" , "helvetica" , sans-serif;">Our 201<span style="font-family: "arial" , "helvetica" , sans-serif;">6</span> Christmas cards are now on sale <a href="http://www.hughes-syndrome.org/get-involved/visit-our-shop.php#xmas">from our website</a>. </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">We
have lots of designs and hope we have something for everyone's taste as
this is a great way to raise awareness of APS/Hughes syndrome as well
as help sustain our charity.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Thank you if you are able to support us this way. </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="http://www.hughes-syndrome.org/get-involved/visit-our-shop.php#xmas">http://www.hughes-syndrome.org/get-involved/visit-our-shop.php#xmas</a></span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-23315181545024886052016-09-09T04:21:00.002-07:002016-09-09T04:21:43.643-07:00Patients' Day now on YouTube<span style="font-family: Arial,Helvetica,sans-serif;">We held our annual APS Patients’ Day for our members at St Thomas’
Hospital, London earlier this year in May, and were fortunate to have
leading experts and patients discussing a wide range of topics including
research, anticoagulation management and testing.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><span style="font-family: Arial,Helvetica,sans-serif;">If you would like to listen to or read any of the presentations, please click on the links below:</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><ul>
<li><span style="font-family: Arial,Helvetica,sans-serif;">YouTube: <a href="https://www.youtube.com/playlist?list=PLsOlR9d1jRjRp2brAEeECWcudM5J_r-fr" style="cursor: default;">https://www.youtube.com/playlist?list=PLsOlR9d1jRjRp2brAEeECWcudM5J_r-fr</a></span> <span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
</li>
<li><span style="font-family: Arial,Helvetica,sans-serif;">PDF which is free for you to view and download: <a href="http://www.hughes-syndrome.org/resources/pdfs/HSF_Patients_day_transcript_2016.pdf" style="cursor: default;">http://www.hughes-syndrome.org/resources/pdfs/HSF_Patients_day_transcript_2016.pdf</a></span>
</li>
</ul>
<span style="font-family: Arial,Helvetica,sans-serif;">
</span><span style="font-family: Arial,Helvetica,sans-serif;">Our charity would like to thank all the speakers for generously
giving their time and expertise to help our patient group, and also
David Schutt and Frances Dixon who kindly volunteered their professional
skills to produce the videos and PDF.</span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-19798238746346669272016-08-30T04:39:00.002-07:002016-08-30T04:39:35.042-07:00New APS treatment for some<span style="font-family: Arial,Helvetica,sans-serif;">The results from the Rivaroxaban in APS trial were published in the Lancet Haematology Journal on 3rd September 2016. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">The study was led by University College London Hospital and Dr Hannah Cohen, Lead researcher, consultant in haematology at UCLH has written the following statement for us: </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">“We have shown in the RAPS trial that rivaroxaban could be an effective, safe and convenient alternative to warfarin in some patients with antiphospholipid syndrome. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">We intentionally included in RAPS only antiphospholipid syndrome patients who had venous blood clots requiring standard intensity warfarin, target INR 2.0-3.0. We caution, therefore, that the results do not apply to other groups of patients with antiphospholipid syndrome and venous blood clots who need higher INRs or with blood clots in arteries such as in stroke patients, in whom further studies are required.” </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">So, to be very clear, if you have had a DVT or PE and have an INR range of between 2.0-3.0, then you now have an alternative treatment to warfarin. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">Rivaroxaban is taken in tablet form daily, does not need to be monitored at all and only stays in your system around 24 hours. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">Please speak to your doctor if you meet the criteria and wish to switch your medication. </span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">To view the full text of the RAPS paper, please click here:
<a href="http://www.thelancet.com/pdfs/journals/lanhae/PIIS2352-3026(16)30079-5.pdf">http://www.thelancet.com/pdfs/journals/lanhae/PIIS2352-3026(16)30079-5.pdf </a></span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">These results are a real breakthrough for some patients, rivaroxaban being the only new medication for APS in over a decade. However, we do know that there is still much work to do and are collaborating in the proposed Rivaroxaban in Stroke and APS trial. We will keep you posted!
</span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0tag:blogger.com,1999:blog-4545163632097246047.post-72358306449795482932016-07-29T07:39:00.001-07:002016-07-29T08:21:15.213-07:00APS Congress location changed <span style="font-family: Arial,Helvetica,sans-serif;">Due to the increasing safety concerns in Istanbul, the organisers of this
year’s International Congress on Antiphospholipid Antibodies have
changed the location of the event to <b>Northern Cyprus.</b></span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;">The date remains the same: 21st –24th September 2016 — please <a href="http://www.apsistanbul2016.org/important-announcement.html">visit the website</a> if you need to check on travel information.</span>APS Support UKhttp://www.blogger.com/profile/07248465154447661503noreply@blogger.com0