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Annabelle’s Challenge is the UK’s only charity dedicated exclusively to Vascular Ehlers-Danlos Syndrome (Vascular EDS).
At the heart of our charity is Annabelle, the inspiration for everything we do. Shortly after her diagnosis at just three years old, her parents, Jared and Sarah Griffin, founded Annabelle’s Challenge in 2013 with a simple but powerful goal: to bring hope, knowledge and support to everyone affected by this rare genetic condition.
Vascular EDS affects arteries, organs and other tissues, making them extremely fragile. People with vascular EDS live with the daily risk of sudden arterial or organ rupture. It is estimated that around 740 people in the UK are affected.
We work in partnership with the EDS National Diagnostic Service, a highly specialised service commissioned by NHS England for individuals and families who are suspected to have complex Ehlers-Danlos Syndrome.
Established in 2009 the service runs two specialist clinics for patients based at Sheffield Northern General Hospital and the Northwick Park & St Mark's Hospitals in London.
Newly Diagnosed?
Being newly or recently diagnosed with vascular EDS can feel overwhelming. The first thing to remember is we are here to help you and your family.
What is Vascular EDS?
Vascular EDS is a rare genetic connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile. We are here to support you.
Need Support?
We can help you find answers to questions or guide you through your concerns about vascular EDS even if you or a loved one have not been diagnosed yet.
Jared
Founder & CEO
Jared founded the charity in January 2013. Since then, Annabelle’s Challenge has supported countless families and worked tirelessly to raise awareness of vascular EDS across the UK and around the world.
Annabelle
The heart of Annabelle's Challenge
At the heart of Annabelle’s Challenge is Annabelle herself, the inspiration and driving force behind our commitment to campaign tirelessly for research, awareness and support for every child and adult affected by vascular EDS.
Annabelle became the youngest person in the UK to be diagnosed with vascular EDS in December 2012, at just three years old.
Lola
Head of Staff Morale
Lola is our office dog and Head of Staff Morale. Since joining us in June 2022. She’s been an essential part of the Annabelle’s Challenge team lifting spirits, reducing stress and keeping everyone focused.
Free Lifetime Membership
With over 550 members, our organisation provides a strong, reliable and safe network for the vascular EDS community. This enables us to advocate effectively and work directly with patients and families, both across the UK and around the world.
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.
What our members have to say:
Victoria Whatton,
vascular EDS parent
vascular EDS parent
For such a small charity they do so much to help those that are part of the vascular EDS family, there is no one else!
Frances Marin,
vascular EDS parent
vascular EDS parent
Annabelle’s Challenge was the first organisation to get all this vEDS awareness going globally. Your friends from Texas are cheering you on!!
Where to find us:
Annabelle's Challenge, Walshaw Park House, Walshaw Road, Bury, BL8 1PY
what3words: taps.drips.water
Join our community today!
Are you affected by vascular EDS? Apply now for free lifetime membership of Annabelle's Challenge.
