Friday, 23 September 2016

Christmas cards now on sale

Our 2016 Christmas cards are now on sale from our website

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.

Thank you if you are able to support us this way.

Friday, 9 September 2016

Patients' Day now on YouTube

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.
If you would like to listen to or read any of the presentations, please click on the links below:
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.

Tuesday, 30 August 2016

New APS treatment for some

The results from the Rivaroxaban in APS trial were published in the Lancet Haematology Journal on 3rd September 2016. 

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: 

“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. 

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.” 

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. 

Rivaroxaban is taken in tablet form daily, does not need to be monitored at all and only stays in your system around 24 hours. 

Please speak to your doctor if you meet the criteria and wish to switch your medication. 

To view the full text of the RAPS paper, please click here: 

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!

Friday, 29 July 2016

APS Congress location changed

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 Northern Cyprus.

The date remains the same: 21st –24th September 2016 — please visit the website if you need to check on travel information.

Tuesday, 26 April 2016

May is APS/Hughes syndrome Awareness Month

We have been holding the APS/Hughes Awareness Month in May now for fifteen years. This is an annual campaign to increase awareness and each year it grows and grows.

As usual we will be holding our annual national Patients' Day this month, and will be creating a buzz on social media. Last year we had a number of articles generated this way so hope to do the same this year.

If you can help us by raising awareness in any way, please get in touch and let's work together!

Thursday, 31 March 2016

Help raise awareness by wearing a wristband

We now have silicon charity wristbands for sale at £2 each available from our website with the slogan: 

“Don’t be a clot—be APS aware”

A great way of raising awareness with your friends and family.

Wednesday, 24 February 2016

Sold Out! Join us at the national Patients' Day 2016

You are warmly invited to join us at the national Patients' Day being held on the afternoon of Wednesday 18th May 2016 at St Thomas' Hospital in London.

The cost of Patients' Day is £20 for members of the Hughes Syndrome Foundation charity, which include yourself and a guest, and £40 for non-members.

If you want to learn more about this unique opportunity and reserve your place, please visit our website and register online.

Friday, 5 February 2016

Can you help?

The European Organisation for Rare Diseases (EURORDIS) is looking for a patient to represent the community of patients and families affected by Catastrophic APS (CAPS) in a panel of experts. 

This panel of experts will be drawing up draft guidelines which will be developed into best practice treatment for those with CAPS, so it’s important that we patients have a voice there if possible. 

The requirements for the patient representative are:

• you have a good command of English 
• you have some experience of CAPS/APS 
• feel able to advise on patient views and preferences 
• are able to travel to Barcelona, Spain on Wednesday 27th April 2016 
• can dedicate a few hours to help draw up the guidelines 

However there is no need to be an expert – they need a PATIENT’S view not a doctor’s or healthcare professional. 

If you’re interested, please contact urgently Juliette Senecat, Health and Social Projects Manager at EURORDIS: / +33 1 56 53 13 64

Wednesday, 20 January 2016

15th International Congress on Antiphospholipid Antibodies 2016: patient workshop

The International Congress on Antiphospholipid Antibodies (aPL) is held every three years to discuss the recent advances and future directions in aPL and Antiphospholipid Syndrome (APS). 

The year the is being held on 21st-24th September 2016 in Istanbul, Turkey and will be chaired by Professor Doruk Erkan. 

During the Congress, a Patient Workshop is taking place on 24th September 2016 that will cover the topics listed below and will provide an opportunity for patients to consult with professionals who have expertise in a particular area of antiphospholipid syndrome and lupus:
  • Basic Immunology for APS and lupus patients
  • Antiphospholipid syndrome and lupus:
    • Clinical Manifestations
    • Kidney Disease
    • Management
    • Damage and Prevention Strategies
    • Pregnancy
    • Importance of Drug Adherence
  • Pediatric Antiphospholipid syndrome and lupus
 You can register online and read more about the congress by clicking here.

Monday, 4 January 2016

Run the British 10K London Race for us in 2016

The British 10K London Run is being held on Sunday 10th July 2016. 

This is the world’s greatest road race run and fantastic if you want to cram some quality sight-seeing into your race. The event winds through the heart of London and you will run past many of London’s historic landmarks. Starting at Hyde Park Corner, the route takes you past Trafalgar Square and St Paul’s Cathedral to Tower Bridge, before returning alongside the River Thames. 

Registration is £20 and, as places are limited, we ask that you try to raise £100 sponsorship money if possible. 

Please email us so we can enter you in the run then send you sponsorship forms, leaflets and a running vest.