SearchBritish Society of Rheumatology conference
- 31 August, 2026
- EDS UK news
The Ehlers-Danlos Support UK are at the British Society of Rheumatology Conference this week. Today our Chief Executive Susan Booth gave a short talk with Ceril Rhys-Dillon, Clinical Lead for Rheumatology Clinical Implementation Network, MSK Health Networks and Planning for NHS Wales Executive. The talk explored the role of Rheumatology in the EDS care pathway. It was well attended with over 50 healthcare professionals including rheumatology, occupational therapy and physiotherapy. We updated the room on the progress on creating the primary care pathway for EDS and HSD in Wales and asked them to consider their role in supporting primary care and sharing their knowledge and expertise.
After the talk many people came over to ask questions and meet the speakers and the EDS UK team. If you are at the conference this week, EDS UK have a stand in charity corner so please come over and say hi. We would love to get more feedback from healthcare professionals on how we can make sure this pathway has the very best chance of success and can be adopted across the UK.
Update 30.04.2025
We are delighted to have brought our members voices to the British Society of Rheumatology conference this week. We have spoken to many medical professionals including Rheumatologists, Occupational Therapists, Physiotherapists, Nurses, GPs, Paediatricians, medical students and many more. We have been blown away by the interest they have shown in EDS, the different subtypes and how they might better support all patients.
We have used the opportunity to share patient stories, challenges and hopes for the future, and our presentation on progress on the GP patient pathway in Wales for EDS, including hypermobile EDS and HSD was positively received by everyone.
The work we are doing in creating primary care pathways will help develop GP confidence and knowledge in diagnosis and management, and we have made new connections at BSR with individuals willing to help develop a specialist multidisciplinary network which can be called on by GPs when specialist referrals and advice are necessary. It’s been very encouraging to meet so many brilliant professionals who care so deeply about their patients and acknowledge the current gap in care, in particular for patients with hypermobility. There is a real sense of willingness in working with the community to drive positive change.
In addition, we have a long list of invitations to share best practice and deliver EDS training sessions to medical students, GPs, physiotherapists and rheumatologists across many different regions of the UK. We’ve also met some amazing people who are willing to work with us on, and potentially fund further opportunities for raising awareness.
Overall, the past three days have been immensely impactful in ensuring the voice of the EDS and HSD community was heard by hundreds of medical professionals and has cemented our place at the table to help shape learning and service development across the UK to come.