APS Support UK News

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.

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 follow

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. 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.  Educational Objectives After reading this activity, healthcare professionals should be better able to: Recognise possible cases of antiphospholipid syndrome (APS) Understand the results of blood tests for antiphospholipid antibodies Manage APS in patients with previous thrombosis Manage pregnancy in patients with APS  http://www.mimslearning.co.uk/antiphospholipid-syndrome-diagnosis-and-management/activity/4882/ 

The Manchester Half Marathon is being held on Sunday 15th October 2017.   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. 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. Registration is £25 and as places are limited we ask that you try to raise £150 sponsorship money if possible. Please contact us if you would like a guaranteed charity place.

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. World APS Day is a global awareness campaign aimed at raising understanding of antiphospholipid syndrome, and its impact on patients’ lives. 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. 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.

Our charity is pleased to present the first Royal College of GPs eLearning course on antiphospholipid syndrome:   elearning.rcgp.org.uk/aps   The charity funded the course which was developed by GPs working with our APS experts, under the guidance of the Royal College.  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.  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.  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.  We are also aski

We have been asked to circulate the following explanation and link to an online questionnaire by the research team at University College London.  It’s slightly technical, but we 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. How you can help influence a new research proposal 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. We are interested in how certain parts of the immune system (antibodies) interact with blood clotting (coagulation) and inflammatory (complement) pathways to cause

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.   P

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/ 

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 b ehalf 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/

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

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 low est 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 …