About Us

Annabelle's Challenge is dedicated to supporting people affected by Vascular Ehlers-Danlos Syndrome (vascular EDS). We aim to improve awareness and funding for 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.

We are the only charity in the UK specifically set up up to support the vascular EDS community providing information and advice, liaising with health care professionals to raise awareness and improve knowledge and management of the condition.

In addition to tirelessly campaigning for research and funding for vascular EDS, we work in partnership with the EDS National Diagnostic Service, a highly specialised service commissioned by NHS England with clinics based in Sheffield and London.

We are also 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 Objectives

EDUCATION

RESEARCH

SUPPORT

We aim to improve the quality of life for those who are affected by Vascular EDS through Education, Research and Support.

WE DESERVE MORE TOMORROWS

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 Vision

Annabelle’s Challenge is committed to driving person-centred research that transforms the landscape of vascular Ehlers–Danlos Syndrome (vEDS) management.

Our vision is a future in which the whole vEDS community—people with vEDS, their families, friends, and wider support networks—has a strong voice in research and access to the highest standards of care.

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 those affected by vascular EDS across the UK and globally.

Today, Annabelle's Challenge supports over 500 members and our commitment that through our continued focus and improving awareness we will one day find treatments and ultimately a cure.