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.

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 


    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: 

    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.