About us
About Us
Annabelle's Challenge is dedicated to supporting people with vascular Ehlers-Danlos Syndrome (vascular EDS). We aim to promote awareness, and fund research into vascular EDS.
The charity was founded in January 2013 by Jared and Sarah Griffin after they were told their daughter Annabelle, then aged three, had vascular EDS. Annabelle was the youngest in the UK to be diagnosed with the condition.
Vascular EDS is characterised by fragile connective tissues caused by abnormal type III collagen and affects multiple organ systems, increasing the risk of blood vessel dissection and rupture, with potentially fatal consequences.
Annabelle’s Challenge has grown to become a leading organisation for information and advice on vascular EDS, liaising with health care professionals to raise awareness and increase knowledge and management of the condition.
In addition to tirelessly campaigning for research and funding for vascular EDS, the charity works closely with the EDS National Diagnostic Service, a highly specialised service commissioned by NHS England with clinics based in Sheffield and London.
Annabelle’s Challenge are proud recipients of The Queen’s Award for Voluntary Service. The award is equivalent to the MBE and is the highest award that can be made to a voluntary group.
Our Challenge
EDUCATION
RESEARCH
SUPPORT
We aim to improve the quality of life for those who are affected by vascular EDS through Education, Research and Support.
Our Challenge To Find Your Cure.
EDUCATION
To advance the education of the general public and medical profession in all areas relating to vascular EDS.
RESEARCH
The relief of sickness and preservation and protection of good health by the provision of funding for the development of research and early diagnosis of vascular EDS.
SUPPORT
To promote and protect the physical and good mental health of sufferers of vascular EDS through the provision of financial assistance, support, education and practical advice.
Our History
Over 10 Years of Service
From an initial awareness campaign launched in 2013, Annabelle's Challenge has grown to be the leading charity for vascular EDS across the UK and globally.
Today, Annabelle's Challenge supports over 580 patients across 25 countries, with a commitment that through continued focus and awareness we will one day find treatments and ultimately a cure.
Our Fundraising
Fundraising Goal: £1,000,000
Fundraising Total: £1,052,003
(Apr 2013 - Nov 2024)
We began fundraising in 2013 and since then we have raised over £1million thanks to our members, supporters donors and grant funders.
Our goal is to raise a further £1million by 2030 to help fund research and support for our vEDS community.
Your donations help to fund:
- Research.
- Free MedicAlert membership.
- Patient & peer support.
- Conferences & Symposiums.
- Retreat Weekends.
- School Training & Support.
- Freephone Helpline.
- Regional Support Groups.
- Mental Health First Aid training.
- VEDS Support Programme.
- Translated Emergency Information.
- Annabelle's Challenge Counselling Service.
Our Team
Toby
Mascot
As a small charity for a rare genetic condition we need to amplify our voice and continue to work with:
Ehlers-Danlos Support UK, The Ehlers-Danlos Society, Genetic Alliance UK, Gene People, The Marfan Foundation, The Aortic Dissection Charitable Trust, Medics 4 Rare Diseases, Beacon for Rare Diseases, Rare Revolution and Eurordis.
-
![]()
VEDS Support Programme
Learn More -
![]()
"We find that, in rare disease, a great comfort is provided by a charity which is both knowledgeable and supportive."
Dr Glenda Sobey, Clinical Lead, EDS Service
"This website has been our lifeline since Teddy's diagnosis"
Elizabeth Whelan, VEDS Parent
10
Over 10 years service supporting the Vascular EDS community.
COL3A1
Vascular EDS is caused by a mutation in the COL3A1 gene.
740
It is estimated around 740 people have Vascular EDS in the UK.
© Copyright 2013-2024 Annabelle's Challenge. REDS4VEDS ® and ™ All rights reserved.
Registered Address: Walshaw Park House, Walshaw Road, Bury, BL8 1PY. Registered Charity No.1157074