About Us

Annabelle’s Challenge is the UK’s only charity dedicated exclusively to Vascular Ehlers-Danlos Syndrome (Vascular EDS), a rare and life‑limiting genetic disorder. Our mission is to raise awareness, fund vital research and provide meaningful support for patients and families living with vascular EDS.

At the heart of our charity is Annabelle, who was diagnosed with vascular EDS at just three years old. Her courage inspired her parents, Jared and Sarah Griffin, to take action. In 2013, they founded Annabelle’s Challenge to ensure that no family facing this diagnosis would ever feel alone.

Since then, the charity has grown into a trusted international voice for the vascular EDS community. In recognition of our impact, we were honoured with The Queen’s Award for Voluntary Service. Equivalent to an MBE, QAVS is the highest award given to voluntary groups in the UK.

Today, we continue to champion education, advocacy and research while building a supportive community for those affected by vascular EDS. Every step we take is driven by the same determination that sparked our beginning, a commitment to make a difference for everyone who is affected by vascular EDS.

We work closely with the EDS National Diagnostic Service, a highly specialised service commissioned by NHS England. With clinics based in Sheffield and London, this partnership helps ensure that patients and families have access to expert clinical care and the latest guidance for managing vascular EDS.

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.

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 network, has a strong voice in research and access to the highest standards of care.

Our History

Over 10 Years of Service

What began as a small awareness campaign in 2013 has grown into a strong community of more than 500 people affected by vascular EDS. Today, Annabelle’s Challenge is focused on raising awareness, driving research, and pushing towards a future with effective treatments and ultimately, a cure!

Annabelle's Journey

Our Fundraising

Driving Change Through Fundraising

Since launching our fundraising efforts in 2013, Annabelle’s Challenge has raised over £1 million, a milestone made possible by the dedication of our members, supporters, donors and grant funders.

Looking ahead, we’re aiming to raise a further £1 million by 2030. This ambitious goal reflects our commitment to advancing research and expanding the support available to everyone affected by vascular EDS.

Your donations help to fund: