VISION 2030

EDUCATION

RESEARCH

SUPPORT

Vision 2030 is our long-term strategic plan and covers the 5-year period, 2025-2030.


Launched 1st January 2025, Vision 2030 aims to further improve the quality of life for people affected by vascular EDS across our charitable objectives: Education, Research and Support.


Vision 2030 will be delivered through our already established and successful VEDS Support Programme.


Now this is where your donations will help…

We currently support over 500 people with vascular EDS and we expect this number will increase to 800 by 2030, donations are vital to help us provide the support they need including counselling, emergency preparedness, self-advocacy tools and future research.


Our aim is to raise £1million over the next 5 years

800

MEMBERS

175

SCHOOLS

2,000

COUNSELLING SESSIONS

VEDS Support Programme

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 support groups and improving quality of life for those affected by vascular EDS.
 
The funding from The National Lottery Community Fund helped the charity reach and connect further individuals and families across the vascular EDS community. At the same time, we have been able to expand our holistic support and increased collaboration with health and educational professionals. 

Through the now established VEDS Support Programme, we aim to connect and build relationships across the vascular EDS 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 vascular EDS.
  • Access to Patient Coordinators who manage the helpline and support volunteer regional coordinators will directly support the vascular EDS community.
  • Provide talks in schools to educate teachers and staff about vascular EDS, support implementation of care plans making them more adaptive and ensure identified risks are minimised to help protect the child diagnosed with vascular EDS whilst in the school environment.
  • Emergency Information for Medical Professionals available translated.
2) Help people better achieve their potential and improve their quality of life:
  • Provide local support groups lead by volunteer regional coordinators who are directly affected by vascular EDS. 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.
  • Facilitating Ambulance markers working with General Practitioners and Ambulance Trusts to put these in place in case of an emergency.
  • Provide vascular EDS management and guidance.
  • Provide a free, confidential counselling service with a rare disease background specifically trained in vascular EDS.
  • Supply emergency preparedness resources including personalised VEDS Emergency Packs.
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.
  • Hosting retreat weekends, conferences and events for the community.
  • Peer support 'buddy up' service for members on our database.
  • Help with creating a care team.
  • Access to research study projects.
  • Access to a private Facebook support group.
  • Mental Health First Aid support.
  • Free MedicAlert UK, Ireland & Australia subscription plus exclusive discounts on bracelets.
  • VEDS information pack and introductory call to new members.
  • Patient Self-Advocacy resources and tools.
It is our commitment that through continued focus and awareness we will one day find treatments and ultimately a cure.
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How the money you raise can make a difference

£25

could give two people the chance to speak to a patient coordinator on our helpline.

£50

could fund a patient MedicAlert membership and VEDS Emergency Information Pack.

£85

could give a member affected by vascular EDS access to a confidential, counselling session.

£100

could provide an in-person support group for up to 10 people touched by vascular EDS.

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