VEDS Support Programme

In August 2021 we were awarded £177,415 in National Lottery funding to support our work with individuals living with vascular EDS. We used the funds to launch the VEDS Support Programme which includes helpline support, delivering talks to schools, hosting regional support groups, facilitating ambulance markers and providing self-advocacy tools.

Funding from The National Lottery Community Fund is helping us to reach and connect further individuals and families across the vEDS community. At the same time, we have been able to expand our holistic support and increased collaboration with health and educational professionals.

The VEDS Support Programme aims to connect and build relationships across the community developing their self-help capability, capacity, skills and confidence, in order to:

1) Reduce risks, and potentially save lives, through improved access to services and greater awareness among health and educational professionals, importantly learning and knowledge-sharing:

Raising awareness amongst clinicians and healthcare providers since the earlier we achieve a correct diagnosis the better the outcome for the individual diagnosed with vEDS.
Access to our patient coordinators who manage the helpline and volunteer area coordinators who directly support the vEDS community.
Support for schools to educate teachers and staff about vEDS, support implementation of health care plans making them more adaptive and ensure identified risks are minimised to help protect the child diagnosed with vEDS whilst in the school environment.
Provide emergency information for medical professionals translated into 12 languages.
Setting up an ambulance marker working with general practitioners and ambulance trusts to put these in place in case of an emergency including updating patient summary care records.
Practical advice on enabling conversations with friends and families who in turn can provide support and advocate where needed.
Support with emergency preparedness resources to help improve outcomes when accessing emergency and routine medical care, including a personalised VEDS Emergency Pack.

2) Help people better achieve their potential and improve their quality of life:

Provide local support groups hosted by our volunteer area coordinators who are directly affected by vEDS. The support groups are for parents, carers, friends, children, and partners to provide a safe space to meet others in a similar situation, provide peer support and make lifelong friends.
Provide management and guidance on living with vEDS.
Host retreat weekends, conferences and local events for the community.
Access to a free, confidential counselling service with a rare disease background specifically trained in vEDS.
Provide a freephone helpline to supports new and existing patients and family members including those who are suspected/awaiting genetic testing.

3) Help more people by increasing membership to provide much needed support:

Break down barriers preventing access to our services by supporting minority groups such as LGBTQ+ and Black and Minority Ethnic communities (BAME).
Working directly with the EDS National Diagnostic Service, a highly specialised service commissioned by NHS England with clinics in Sheffield and London.
Access to online virtual support and 1-2-1 support including a peer support 'buddy up' service.
Provide the latest guidance on accessing disability benefits and allowances through our professional membership with Benefits and Work.
Guidance on creating a care team of specialists.
Involvement in clinical trials, research projects and feedback opportunities.
Access to a private Facebook vEDS UK support group.
Provide Mental Health First Aid support, well-being resources and signpost to relevant charities.
Free Hidden Disabilities Sunflower scheme lanyard and vEDS awareness card.
Free MedicAlert membership for 12 months.
Exclusive discount on Careline365 SOS alarm subscriptions.
VEDS information pack and introductory call provided to all new members.
Guidance in self-advocating and access to supporting tools.

From the moment you join Annabelle's Challenge, you will have access to all our resources and support services.

It is our commitment that through continued focus and awareness, we will one day find treatments and ultimately a cure.

Meet Danika

Danika - Patient Coordinator

Danika joined Annabelle's Challenge in April 2022.

"Before joining the charity I was a childcare professional with 13 years’ experience of working with children and their families.

Recently I 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."

Alongside her role as a patient coordinator, Danika is also a Mental Health First Aider accredited by MHFA England and is a certified Level 2 in counselling skills.

Meet Scarlett

Scarlett - Patient Coordinator

Scarlett joined Annabelle's Challenge in October 2023.

"I am so pleased to be given this amazing opportunity to take on the role as a patient coordinator for the charity to help support all our members both existing and newly diagnosed. I have previous experience in childcare, and I love to travel especially to Ireland".

Scarlett is also a Mental Health First Aider accredited by MHFA England and is the coordinator for Ireland & NI.