Tuesday, 7 March 2017

Largest grant ever awarded for APS research in the UK

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. 

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. 

 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. 

 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.” 

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. 

“The possibility of a new treatment will undoubtedly give hope to patients and will be warmly welcomed by clinicians working in the field.” 

For more information, please read the UCL press release.

Tuesday, 14 February 2017

Antiphospholipid antibodies disappearance in primary antiphospholipid syndrome

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.

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.

The study suggest that, in primary APS, persistent negative antiphospholipid antibody profile is not an indication to interrupt oral anticoagulant therapy.

https://cancerologyoncologysfakianakis.wordpress.com/2017/02/13/antiphospholipid-antibodies-disappearance-in-primary-antiphospholipid-syndrome-thrombosis-recurrence/ 

Friday, 10 February 2017

Festival volunteering opportunity

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.

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 behalf to their chosen charity.

So, if you're a festival go-oer and want to get involved, please have a look at their website:

http://mycauseuk.com/charity/aps-support-uk/

Friday, 3 February 2017

APS Specialists Directory

Thanks to all the patients who have recommended their APS doctors to us and allowed us to produce the UK Specialists Directory. 

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.

We have just added over eight new doctors this year alone and now have a list of almost 130 throughout the UK.

Please do let us know if your APS specialist is missing from the list and thanks again for making this possible.
 
http://www.aps-support.org.uk/…/specialists-in-your-area.php

Tuesday, 31 January 2017

PREGNANTS working group releases results of large study

The PREGNANTS working group, (PREGNancy in women with ANTiphospholipid Syndrome), has just released the results of a large study.

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).

They found that aCL is the most common antiphospholipid antibody present, but ab2GPI is the one associated with the lowest livebirth rate and highest incidence of pre-eclampsia, low weight babies and stillbirth, compared to presence of aCL or LA alone.

This pivotal study will help guide research in the future, thanks to all those women who took part.
http://www.ajog.org/article/S0002-9378(17)30148-5/fulltext

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. 

http://www.hughes-syndrome.org/get-involved/visit-our-shop.php#xmas

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.