Our strategic plan for supporting vEDS members.

Vision 2025

Fundraising Goal: £1,000,000

Fundraising Total: £1,052,003

(Apr 2013 - Nov 2024)

Vision 2025 is our ambitious strategic plan to improve the support we provide to those affected by vascular EDS.

We began fundraising in April 2013 and so far we have raised over £1m thanks to our members, supporters donors and grant funders.

This amazing milestone comes 20 months ahead of our original Vision 2025 projection and helps us to move

forward with vital research and support for patients and families affected by vascular EDS alongside our 3 core objectives; Education, Research and Support.

By 2025 we aim to:

- Support 500 members/ families
- Support 50 schools
- 5 conference/retreat weekends
- Raise £1,000,000
- Fund Research
- Support Clinical Trials

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 will use the funds to deliver the VEDS Support Programme which includes helpline support, delivering talks to schools, hosting regional support groups, visiting families in their home, and facilitating ambulance markers.

The new funding from The National Lottery Community Fund will see the charity reach and connect further individuals and families across the vEDS community. At the same time, we will be able to expand our holistic support and increased collaboration with health and educational professionals.

Through our VEDS Support Programme we aim to connect and build relationships across the vEDS 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 healthcare professionals, importantly avoiding common mis-diagnosis:

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 Patient Coordinators who manage the helpline and support volunteer Area Coordinators will directly support the vEDS community.
Provide talks in schools to educate teachers and staff about vEDS, support implementation of healthcare plans making them more adaptive and ensure identified risks are minimised to help protect the child diagnosed with vEDS whilst in the school environment.
Attendance of our charity at cardiology appointments in the joint EDS/ICC clinics to provide support directly to patients and family members and to reach out to more people affected by vEDS.

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

Provide local support groups lead by 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.
Home visits to help improve quality of life with mental health and wellbeing support, and to agree care & management plans to help keep them safe and fulfil as much of a normal life as possible living with vEDS.
Facilitating Ambulance markers registered to a patient’s address working with General Practitioners and Ambulance Trusts to put these in place in case of an emergency.
Provide vEDS management and guidance.

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

Provide a freephone helpline to supports new and existing patients and family members and those who are suspected/awaiting genetic testing.
Break down barriers preventing access to our services by supporting minority groups such as LGBTQ+ and Black and Minority Ethnic communities.
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 calls.
VEDS retreat weekends, conferences and events for the community.
Drop in 'clinic' at our office in Bury, Manchester.
Peer support 'buddy up' with other vEDS members on our database.
Help with creating a care team.
Access to research study projects.
Access to private Facebook vEDS support groups.
Mental Health First Aid support.
Free MedicAlert UK, Ireland & Australia subscription plus exclusive discounts on bracelets.
New VEDS information pack and introductory call to new members.