Annabelle's Challenge Vascular EDS Charity

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Annabelle's Challenge Vascular EDS Charity Annabelle's Challenge is the leading charity for vascular Ehlers-Danlos syndrome (vascular EDS) in the UK. Our challenge is to find a cure for vascular EDS.

UK registered charity supporting patients and families affected by Vascular Ehlers-Danlos Syndrome working in partnership with the NHS EDS National Diagnostic 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. It 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 life-threatening 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 with clinics in Sheffield & London. To help raise the profile of vEDS, Annabelle's Challenge hosts the annual global awareness campaign REDS4VEDS Day which takes place every year on the third Friday of May. The charity is also proud recipients of The Queen's Award for Voluntary Service, the MBE for volunteer groups. 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.

09/10/2026

The Science in Spain meeting was a tremendous success and a personal thank you to everyone at The Marfan Foundation.

As living with vascular EDS happens within the context of your everyday life, it’s inevitable that the ‘ups and downs’ o...
07/10/2026

As living with vascular EDS happens within the context of your everyday life, it’s inevitable that the ‘ups and downs’ of both will impact on each other. You can talk to our counsellors about anything that you are struggling with.

This might include:
🔘 Your family relationships
🔘 Feeling different, lonely or isolated
🔘 Anxiety or low mood
🔘 Loss and grief
🔘 Your relationship with health care professionals, or navigating systems
🔘 Coping with difficult, unpredictable or increasing symptoms
🔘 The psychological burden of becoming a ‘vascular EDS expert’
🔘 Managing unpleasant tests, surgery or treatments
🔘 Fears about the future

Annabelle’s Challenge Counsellors provide a safe, confidential relationship to explore difficult thoughts or feelings, and talk about the things that matter to you in living with the impact of vascular EDS.

Learn more about our partnership with Rareminds: https://www.annabelleschallenge.org/counselling-service

06/10/2026
MumsOnAMission 🥋 | Brazilian Jiu Jitsu Fundraiser for Annabelle’s Challenge.We may not be running, but we’re still fight...
06/10/2026

MumsOnAMission 🥋 | Brazilian Jiu Jitsu Fundraiser for Annabelle’s Challenge.

We may not be running, but we’re still fighting, quite literally. 🥋

This is what MumsOnAMission is all about: fighting for something bigger than ourselves, for Mia and everyone with Vascular EDS.

My partner in crime, my teammate and, quite frankly, someone I’m very glad to have fighting by my side ❤️

Safe to say Charlotte is much better at disarming a gun than I am… so nobody mess with her. 😂

Actually, nobody mess with us, because we’re fighters, and we’re not giving up ❤️‍🔥

Bonnie, MumsOnAMission.

06/10/2026

Prof Bart Loeys speaking to VASCERN at the Science in Spain meeting.

Can you help us to improve the way people receive genetic results.Do you know someone who has received a genetic test re...
05/10/2026

Can you help us to improve the way people receive genetic results.

Do you know someone who has received a genetic test result, or work with people who have?

We know that many of you have received genomic test results while you were driving, on the school run and even at work. That’s why we are supporting the NHS South East Genomic Medicine Service in their quest to improve the way people receive their genetic results.

To do that, we would encourage you to complete this short survey about your personal experience of receiving your genetic results.

They want to hear the positive, the challenging and everything in-between. The more feedback they get, the more improvements they can make.

Find the survey link here: bit.ly/3Sjl09n

04/10/2026

Update on the incredible first day of the Science in Spain meeting and 12th International Research Symposium for vEDS, LDS and Marfans.

First day of the Science in Spain 2026 meeting hosted by The Marfan Foundation. This is the 12th International Research ...
04/10/2026

First day of the Science in Spain 2026 meeting hosted by The Marfan Foundation.

This is the 12th International Research Symposium of Marfan, Loeys-Dietz, Vascular Ehlers-Danlos Syndrome and Related Conditions uniting the world’s leading scientists, physicians, surgeons and health care professionals.

02/10/2026

Update from Annabelle’s Challenge during VEDS Action Month.

Address

Walshaw Park House, Walshaw Road
Bury
BL81PY

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+441617974746

Website

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