Monday, 25 February 2019

APS Support UK Research Fund

We are now offering small grants of up to £5,000 for research projects specifically concentrating on antiphospholipid syndrome. 

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. 
 

Applications will be considered for:
  • Smaller pilot studies which will lead to applications to major funders for large-scale research trials

  • Enabling grants for basic science support that would enable larger projects by providing essential data for large grant applications

  • 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)

  • 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
APS Support UK is willing to work collaboratively with other charities where research interests overlap.

Please read the research section on our website for more information.



Tuesday, 16 October 2018

World Thrombosis Day 2018

Four APS organisations joined forces to raise awareness of antiphospholipid syndrome for World Thrombosis Day 13th October 2018.

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.

To read more about the APS campaign, please read our World Thrombosis Day leaflet.

During the campaign we asked that patients write in with questions that would be answered by members of APS-ACTION. You can read this patient questions and answers here.

Thank you so much to everyone who contributed to the #WTDay18 APS Support Campaign.

Tuesday, 8 May 2018

Important information for patients taking hydroxychloroquine

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. 

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. 

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. 

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. 

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: 

https://www.rcophth.ac.uk/wp-content/uploads/2018/03/Hydroxychloroquine-and-Chloroquine-Retinopathy-Screening-Guideline-and-Recommendations.pdf

There is also a very useful leaflet produced by the Macular Society that you may find helpful: 

https://www.macularsociety.org/sites/default/files/resource/Hydroxychloroquine%20-%20access_0.pdf

Sunday, 29 April 2018

A new awarding winning iBook about antiphospholipid syndrome is now available to download for free.

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.

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".

The APS iBook has won two awards: Best iBook of the Year, Education Category, Science Subcategory and One of the Three Best iBooks of the Year, All Categories.

Definitely worth a read! Please click here to download your copy.

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.

Friday, 9 February 2018

APS Support UK and LUPUS UK are jointly funding research into APS at University College London

Thanks to the efforts of our fundraising committee, the Louise Gergel Fellowship, and matching funding from LUPUS UK 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.
 
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.
 
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.
 
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.
 
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.
 
She says: “With the Louise Gergel Fellowship, I propose to build on the exciting results generated from my previous research at UCL”.
 
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. 
 
One of the available drugs that act on autophagy, sirolimus,has been the subject of a study 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.




Thursday, 14 September 2017

New range of Christmas cards now available

Christmas is just around the corner again so please do consider supporting our charity if you’re sending cards this year. 

This is a great way to raise awareness of APS among your family and friends, as well as help sustain our charity.

Our 2017 Christmas cards are now on sale on our website. We have lots of designs and hope there is something for everyone's taste.

Please be aware that we have limited stock and some designs sold out very quickly last year.

For those of you who would prefer to make a donation in lieu of sending cards, please do so on our secure Christmas donation page.


Thank you so much for your valued support – together we are stronger.

Friday, 1 September 2017

James Lind Alliance: priority for research into miscarriage

Our charity was delighted to be invited to be a key stakeholder in the priority setting partnership organised by the James Lind Alliance.

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.

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.

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. 

In summary, the top 10 priorities were ranked as follows: 
  • research into preventative treatment
  • emotional aspects in general
  • investigation and relevance of pre-existing medical conditions
  • emotional support as a treatment
  • importance of lifestyle factors
  • importance of genetic and chromosomal causes
  • preconception tests
  • investigation after different numbers of miscarriage
  • male causal factors
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.

To read the full paper, please click here.