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Freephone Helpline
0800 917 8495Need Support & Advice?
General Enquiries
0161 797 4746Weekdays 9am - 5pm
Our main office line & helpline is closed until Wednesday 30th April
EDUCATION
RESEARCH
SUPPORT
Annabelle's Challenge is the leading charity for vascular Ehlers-Danlos Syndrome (vascular EDS) and proud recipients of The Queen's Award for Voluntary Service.
At the heart of the charity is Annabelle who is the inspiration behind our challenge to provide education, research and support for patients and families affected by vascular EDS. The charity was founded in 2013 by Jared and Sarah Griffin shortly after their daughter Annabelle was diagnosed at the age of 3.
Vascular EDS (vEDS) is a rare connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile. Patients are at daily risk of sudden arterial or organ rupture and it is thought to affect around 740 people in the UK.
We work closely 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 started the charity in January 2013 when his daughter Annabelle was diagnosed with vascular EDS. Since then the charity have helped many families, raising awareness both at home in the UK and across the globe.
Annabelle
The heart of Annabelle's Challenge
At the heart of the charity is Annabelle who is the inspiration and motivation for us to work tirelessly campaigning for research and funding to support children and adults touched by vascular EDS.
Annabelle was the youngest person in the UK to be diagnosed with vascular EDS in December 2012 at the age of 3.
Annabelle is now 16 years-old.
Lola
Head of Staff Morale
Lola is our office dog and Head of Staff Morale, she joined us in June 2022 and is very much part of the team here at Annabelle’s Challenge helping to reduce stress, boost office morale and keeps all the AC team happy and focused.
Free Lifetime Membership
With over 500 members, our organisation forms a strong, reliable & safe network for the vascular EDS community, this allows us to advocate and work directly with the patients and families we support both in the UK and at a global level.
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.
