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.

Thursday, 27 July 2017

MIMS Learning Module now available

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/ 




    Friday, 16 June 2017

    Places for the Manchester Half Marathon on Sunday 15th October 2017

    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.


    Friday, 9 June 2017

    The first World APS Day

    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.


    Thursday, 8 June 2017

    GP online training course

    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 asking for APS patients to help with this education campaign and have produced a GP flyer that you can download and take along to your GP the next time you visit.

    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. 

    If you would like to receive some flyers by post, please contact us and we'll get some sent out to you.

    Wednesday, 5 April 2017

    Give your views on future research

    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 disease.

    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. 

    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. 

    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. 

    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:

     
    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.

    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