Annabelle's Challenge Vascular EDS Charity

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 sh

ortly 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.

Thank you so much to everyone who supported last night’s Brandon’s Legacy fundraising event. Because of your incredible ...
29/08/2026

Thank you so much to everyone who supported last night’s Brandon’s Legacy fundraising event. Because of your incredible generosity and participation, a total of £1,606.70 was raised to support our vEDS community in Brandon’s memory.

We would also like to give a heartfelt thank you to Chantelle Williets, Lynda Allen and every single person who played a part in making this event such a huge success. Your dedication, kindness and commitment continue to honour Brandon’s legacy in the most meaningful way.

Thank you again for being such an essential part of our vEDS community.

Well done, everyone. 💜

Jared Griffin
Founder & CEO, Annabelle’s Challenge
On behalf of all our vEDS community

Brandon’s Legacy - Supporting Annabelle’s Challenge

With over 600 members, our organisation provides a strong, reliable and safe network for the vascular EDS community. Thi...
28/08/2026

With over 600 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.

Free Lifetime Membership - Join us today!

👉 https://www.annabelleschallenge.org/join

Throwback Time! Back in May 2017, history was made in Bury, Manchester, when we hosted the world’s first Vascular EDS co...
27/08/2026

Throwback Time! Back in May 2017, history was made in Bury, Manchester, when we hosted the world’s first Vascular EDS conference. With 240 delegates in attendance, it became a landmark moment for our community.

Experts from the EDS National Diagnostic Service shared the latest medical knowledge, helping patients and professionals better understand how to manage and treat vascular EDS.

But the heart of the event was the people. Families and individuals touched by vEDS came together, many for the first time, to connect, share their stories and build friendships that still mean so much today. 💜

As living with vascular EDS happens within the context of your everyday life, it’s inevitable that the ‘ups and downs’ o...
26/08/2026

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

Special event taking place in Wales this Friday! You are invited to attend Brandon’s Legacy — a night created in memory ...
25/08/2026

Special event taking place in Wales this Friday! You are invited to attend Brandon’s Legacy — a night created in memory of Brandon. 💜

The family team behind Brandon’s Legacy - Supporting Annabelle’s Challenge have poured their hearts into making this night something special, and now they have ONE final mission…

TO FILL THAT ROOM FOR BRANDON!

🎟️ Tickets are just £5
🍽️ Buffet included
🎟️ Raffle ticket included
🎁 AMAZING prizes to be won
🎉 More raffle & prizes on the night

📅 Friday 28th August
📍 Barry
⏰ 7:30pm – 11:30pm

Tickets are available here: https://www.eventbrite.com/e/brandons-legacy-charity-night-tickets-1993547336749

Join the Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes meeting, hosted by The Ehlers-Danlos Society...
25/08/2026

Join the Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes meeting, hosted by The Ehlers-Danlos Society on September 3–4, 2026, in Ghent, Belgium, or online from anywhere in the world with live translation in 60+ languages.⁠

This global hybrid meeting brings together clinicians, researchers, scientists, patient representatives, policymakers, and industry leaders to share emerging research, foster international collaboration, and help advance precision medicine for the genetically defined types of EDS.

Healthcare professionals attending live sessions can claim up to 11.5 CME credits.

Register Today: https://www.ehlers-danlos.com/precision-medicine-for-genetically-defined-ehlers-danlos-syndromes/

What is genetic testing? Genetic testing – sometimes called genomic testing – finds changes in genes that can cause heal...
24/08/2026

What is genetic testing? Genetic testing – sometimes called genomic testing – finds changes in genes that can cause health problems. It's mainly used to diagnose rare and inherited health conditions such as vascular EDS.

Some people with vascular EDS are diagnosed on the basis of subtle signs in their physical appearance, together with their medical history and a genetic test. Many people who do not have vascular EDS can have some of these features as some are common in the general population. Also, not everyone with a confirmed diagnosis of vascular EDS has all of the typical features.

Who can have a genetic test on the NHS?
You need to be referred for genetic testing by a doctor. Talk to your hospital specialist about whether testing is right for you.

Is genetic testing free on the NHS?
Genetic testing is free on the NHS if you are referred for it by a hospital specialist. You will generally only be referred if you have a suspected genetic health condition or if you have a particular type of cancer.

Having a genetic test
A genetic test is usually done using a sample of your blood or saliva, and in some cases a skin biopsy. The sample of blood, saliva or body tissue is sent to a genetic testing laboratory to be analysed.

Getting the results
You'll be told when to expect the results of your test. Currently, it takes approximately 4 months and in some instances results are available sooner therefore we advise to stay with the NHS for genetic testing.

Learn more: https://www.annabelleschallenge.org/genetics

Have your say over the future of vascular surgery in Greater Manchester!NHS Greater Manchester has opened two public con...
24/08/2026

Have your say over the future of vascular surgery in Greater Manchester!

NHS Greater Manchester has opened two public consultations on where specialist heart (cardiac) and vascular surgery will take place in future, and it closes on 22 September 2026.

The vascular proposal would move all specialist arterial vascular surgery out of Royal Oldham Hospital and bring it together at Manchester Royal Infirmary (MRI).

Vascular surgery matters especially to patients affected by Vascular Ehlers-Danlos Syndrome (Vascular EDS) and access to the nearest specialist vascular surgery is vital and in some cases time-critical.

In our opinion we believe it could possibly be detrimental to patient care to those who need to access the specialist vascular surgery and care team currently provided at Royal Oldham, especially those who are affected by vascular EDS.

NHS GM says most routine care, appointments, scans and follow-ups would still happen locally at Oldham Royal with only specialist surgery and inpatient stays moving to MRI.

For patients and their families, surgery and recovery is often the most important part of the journey especially with the complications associated with vascular EDS. It would also mean travelling further putting additional pressure on families at a critical time.

We need your help! Have your say about specialist vascular surgery in Greater Manchester.

The NHS can only take account of what people actually tell them.

Have your say on this proposal before 22 September at https://getinvolved.gmintegratedcare.org.uk/en-GB/projects/vascular

22/08/2026

💜 7 DAYS TO GO….Secure your tickets today! 💜

265 days to go❗️ Friday 14 May 2027 is REDS4VEDS Day, a global campaign hosted by Annabelle's Challenge to raise awarene...
21/08/2026

265 days to go❗️ Friday 14 May 2027 is REDS4VEDS Day, a global campaign hosted by Annabelle's Challenge to raise awareness of Vascular EDS.

REDS4VEDS was launched in May 2015 and continues to gain momentum year on year helping to raise awareness for those who are affected by vascular EDS, it is also a great way to raise vital funds for research.

Learn more: https://www.reds4veds.org/

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

Alerts

Be the first to know and let us send you an email when Annabelle's Challenge Vascular EDS Charity posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category