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 and access to Education, Research and Support for children, adults and their families affected by vascular EDS.

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.