Progress so far
One of our key aims is to support research into antiphospholipid syndrome (APS) and have committed over £500,000 to-date into research we believe will have a real impact on the APS community
We do not receive funding from the government or other public bodies, and rely purely on public donations - needless to say, we need your support to continue this work.
Since the charity was founded in 2001, we have funded the following people and projects:
- an APS research doctor at St Thomas’ Hospital for three years – this led to the important discovery that APS can cause spontaneous bone fractures in some patients
- an APS research fellow at St Thomas’ Hospital for ten years – this role focussed on several lines of research including the role of monocytes in APS and assessing the risk of developing the clinical manifestations of APS. The funding for this research fellow was raised by our memorial fundraising sub-committee, the Louise Gergel Fellowship
- APS and cognitive function – this project found that people who have thrombotic APS are twice as likely to experience memory and thinking problems compared to those with obstetric APS
- APS and fatigue – this project investigated the impact of fatigue and physical inactivity in patients with APS
- In 2016, together with the Louise Gergel Fellowship, we awarded Young Scholar Awards to Lucas van den Hoogen and Cecile Marie Yelnik at the International Congress on Antiphospholipid Antibodies
- APS and autophagy – this current University College London project is jointly funded by LUPUS UK and the Louise Gergel Fellowship and aims to discover whether a malfunction in autophagy leads the immune system to attack the body and cause symptoms of APS
In addition to funding projects and researchers, we facilitate APS research by providing access to our patient group, recruiting patients for trials, helping to draft questionnaires and disseminating surveys. This type of collaboration has assisted in the publication of a number of studies including:
- Patients’ experience of a diagnosis of APS
- Antiphospholipid syndrome: description of population and health-related quality of life
- Rivaroxaban in APS study
- Exercise Participation in People with Antiphospholipid Syndrome: Associations with Exercise Self-Efficacy and Illness Perception
- Going viral in rheumatology: using social media to show that mechanistic research is relevant to patients with lupus and antiphospholipid syndrome
In the last few years we have also provided letters of support to over twenty researchers applying for external grant funding, and even played a role in securing the largest grant ever awarded in the UK for research into APS.
In 2017, the Medical Research Council awarded a £3.5million grant to the Centre for Rheumatology at University College London to continue developing a new treatment for APS. Professor Anisur Rahman, a Trustee and Medical Advisor at APS Support UK, is leading the team at UCL and says:
“The involvement of APS Support UK was really important in helping us to get this research grant. The MRC, like other grant-giving bodies, is keen that researchers should involve patient groups in planning projects. It is important for us to hear what patients feel about the research we are doing and how it might benefit people with APS. This charity provides essential patient input for researchers”.
If you wish to donate specifically for research, please click here and your donation will be restricted for research purposes only.