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VEDS Support Programme
VEDS Support Programme
In August 2021, we were awarded £177,415 from The National Lottery Community Fund to strengthen our work with individuals and families living with vascular EDS. This funding enabled us to launch the VEDS Support Programme, a comprehensive initiative offering advice, support and self‑advocacy resources.
National Lottery funding helped us to reach more people across the vEDS community, expand our holistic support and deepen collaboration with health and education professionals.
What the VEDS Support Programme Delivers
Developed by Jared Griffin and Christina Fallows, the VEDS Support Programme focuses on building confidence, capability and connection across the vEDS community. It aims to reduce risks, improve quality of life and ensure more people can access the support they need.
1) Reducing Risks and Improving Safer Outcomes
- Raising awareness among clinicians and healthcare providers to support earlier diagnosis and better outcomes.
- Access to our patient coordinators and volunteer regional coordinators through the adviceline.
- Support for schools to educate staff, implement adaptive healthcare plans and minimise risks for children with vEDS.
- Emergency information for medical professionals, translated into 16 languages.
- Setting up ambulance markers and updating summary care records in partnership with GPs and ambulance trusts.
- Practical guidance for conversations with friends and family to strengthen support networks.
- Emergency preparedness resources, including personalised VEDS Emergency Packs, to improve outcomes during emergency and routine care.
2) Improving Quality of Life
- Local support groups hosted by volunteer area coordinators affected by vEDS, offering safe spaces for parents, carers, children, partners and friends.
- Management guidance for living with vascular EDS.
- Retreat weekends, conferences and local community events.
- Free, confidential counselling with a rare disease background and specialist vEDS training.
- A freephone helpline for new and existing patients, including those awaiting genetic testing.
3) Reaching More People and Expanding Support
- Breaking down barriers to access for minority groups, including LGBTQ+ and Black and Minority Ethnic communities.
- Working directly with the EDS National Diagnostic Service (NHS England) in Sheffield and London.
- Online and 1‑to‑1 support, including a peer “buddy up” service.
- Up‑to‑date guidance on disability benefits through our professional membership with Benefits and Work.
- Support in building a specialist care team.
- Opportunities to take part in clinical trials, research projects and feedback initiatives.
- Access to our private UK vEDS Facebook support group.
- Mental Health First Aid support, wellbeing resources and signposting to relevant charities.
- Free Hidden Disabilities Sunflower lanyard and vEDS awareness card.
- Exclusive discount on MedicAlert membership.
- Exclusive discount on Careline365 SOS alarms.
- A VEDS information pack and introductory call for all new members.
- Self‑advocacy guidance and tools to help individuals navigate healthcare and daily life with confidence.
Meet Danika
Danika - Patient Coordinator
Danika joined Annabelle's Challenge in April 2022 taking on the role of patient coordinator.
"Before joining the charity, I was a childcare professional with 13 years’ experience of working with children and their families.
I have completed my studies of Mental Health at college and gained a qualification in Mental Health Awareness Level 1 and Level 2 in Social Care and Children’s And Young Peoples Mental Health."
Danika is a Mental Health First Aider accredited by MHFA England and is certified Level 3 in counselling skills. She is also emergency First Aid trained.
Meet Scarlett
