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.

Join us on Saturday 10th October in London for the Second International Symposium on Living Better with Marfan, Loeys-Di...
24/06/2026

Join us on Saturday 10th October in London for the Second International Symposium on Living Better with Marfan, Loeys-Dietz, VEDS and Stickler.

REGISTER NOW HERE: https://marfan.org/calendar/london-symposium-living-better-with-marfan-loeys-dietz-veds-and-stickler

Attendees will learn from a team of international medical experts, network with professionals and others on a similar medical journey, and enjoy a “Creating Connections” lunch. Breakfast is also available and activities for Children 5-12 will be provided in a separate area.

The symposium is free, but registration is required.

The Second International Symposium/London: Living Better with Marfan, Loeys-Dietz, and VEDS is brought to you by The Marfan Foundation, Marfan Trust UK, The Aortic Dissection Charitable Trust, Stickler Syndrome UK and Annabelle’s Challenge.

Home Bargains Area 80 team are hosting a charity rounders game this Sunday 28th June at Kearsley Cricket Club in Bolton....
23/06/2026

Home Bargains Area 80 team are hosting a charity rounders game this Sunday 28th June at Kearsley Cricket Club in Bolton.

44 players from different HB stores coming together for a charity rounders tournament. 💜

🎉 We are delighted to announce the next vEDS Retreat Weekend! 🎉Join us Friday 4th – Sunday 6th December 2026 for a speci...
22/06/2026

🎉 We are delighted to announce the next vEDS Retreat Weekend! 🎉

Join us Friday 4th – Sunday 6th December 2026 for a special festive getaway at The Cliffs Hotel, Blackpool.

This year’s retreat, funded by Annabelle’s Challenge, offers an All‑Inclusive Festive Weekend with 2 nights’ accommodation, great food, entertainment and plenty of relaxed free time.

It’s the perfect opportunity for our members to connect, unwind, share experiences, and build life‑long friendships in a supportive and welcoming environment.

We can’t wait to bring everyone together for a memorable weekend filled with community, comfort and festive cheer.

A minimum suggested donation of £99 per adult applies.

Learn more and register your interest: https://www.annabelleschallenge.org/blackpool-retreat-2026

Image credit Visit Blackpool.

Vascular EDS is a rare connective tissue disorder that affects all tissues, arteries and internal organs making them ext...
19/06/2026

Vascular EDS 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.

Vascular EDS can take life in an instant. Help us change that.

Please support us to make more tomorrows possible for people living with vascular EDS.

£10 could fund a patient VEDS Emergency Pack and access to emergency preparedness resources.

£25 could give two people the chance to speak to a patient coordinator on our helpline.

£50 could give a member affected by vascular EDS access to a confidential, counselling session.

£100 could provide an in-person support group for up to 10 people touched by vascular EDS.

Learn more: https://www.annabelleschallenge.org/more-tomorrows

A huge thank you to the team at Matrix for generously match‑funding employees who have raised money for Annabelle’s Chal...
19/06/2026

A huge thank you to the team at Matrix for generously match‑funding employees who have raised money for Annabelle’s Challenge over the past 12 months.

Your incredible donation of £3,040 will make a real difference, helping us continue supporting children, adults and families affected by vascular EDS.

A special thank you to Shaun Toner for championing Annabelle’s Challenge within the Matrix team and helping raise vital awareness of vEDS.

Together, you’re helping us create more tomorrows for the vEDS community. 💜

18/06/2026

Dear vEDS. A poem has been born from a year of silent battles, unspoken fears and strength I never knew existed until my wife and boys showed me.

𝐃𝐞𝐚𝐫 𝐯𝐄𝐃𝐒 is more than words. It is a tribute to the courage, resilience and light my family has held onto through one of the hardest chapters of our life.

Connor Peebles. 💜

🌻If you currently use the Hidden Disabilities Sunflower Lanyard, you need to be aware of this important update: 🇪🇸 Spani...
17/06/2026

🌻If you currently use the Hidden Disabilities Sunflower Lanyard, you need to be aware of this important update:

🇪🇸 Spanish airports now use aena’s own FREE Invisible Disability Badge for access to their dedicated assistance security lanes and support services.

The hidden awareness badge is completely free to apply for online via AENA and can help make your airport experience much smoother and less stressful at Spanish airports.
✅ Access to dedicated assistance security lanes (where available)
✅ Additional support throughout the security process
✅ Easier identification for airport staff
✅ Only one badge is needed per family or travelling group

Available at selected Spanish airports including: Alicante, Barcelona, Fuerteventura, Gran Canaria, Ibiza, Lanzarote, Málaga, Menorca, Palma de Mallorca, Reus & Tenerife South.

How to apply:
🔘 Complete online application at least 48 hours before travel
🔘 Enter your passenger and flight details
🔘 Submit your application
🔘 Receive your badge by email
🔘 Save it to your phone or print it out to present at the airport

Make sure you still have your sunflower lanyard with you for use in UK airports on departure and arrival.

Learn more: https://www.aena.es/en/passengers/travellers/passengers-with-special-needs/invisible-disabilities/invisible-disabilities-badge.html?

As a small charity, we rely on people like you - families, friends and work colleagues to help us reach those who need u...
16/06/2026

As a small charity, we rely on people like you - families, friends and work colleagues to help us reach those who need us most. Your support changes lives!

Fundraising and awareness are the heartbeat of our work. When you get involved, you help us:
💜 Reach more people living with vEDS
💜 Provide vital support to affected families and individuals
💜 Fund research that brings hope for better treatments and a cure
💜 Raise awareness of a rare and often misunderstood genetic condition

Your involvement means everything! Every person who stands with us strengthens the vEDS community. Together, we can raise awareness, inspire hope and drive meaningful change for everyone affected by vascular EDS.

Get involved: https://www.annabelleschallenge.org/get-involved

Great news for our vEDS community in the UK! We’ve made it simpler to get the support you need.Our VEDS Resources Hub is...
15/06/2026

Great news for our vEDS community in the UK! We’ve made it simpler to get the support you need.

Our VEDS Resources Hub is now available online for quick, easy access. Take a look: https://www.annabelleschallenge.org/resources

You will be required to enter the password which can be found in both your purple and red packs.

It is now possible to access and download the following:
✅ Benefits and Work guides (PIP, ESA, AA & Carers Allowance)
✅ Translated emergency information documents
✅ VEDS Emergency Pack
✅ VEDS Information Pack
✅ Members discount codes
✅ Blue wallet card request
✅ Ambulance marker requests
✅ Update your contact details
✅ Annabelle's Challenge Counselling Service
✅ Obtain updates and new resources

Today at 4:00 PM ET (9:00 PM BST), Dr. Dietz talks the latest on VEDS research. But the only way to access that session ...
15/06/2026

Today at 4:00 PM ET (9:00 PM BST), Dr. Dietz talks the latest on VEDS research. But the only way to access that session is to register for Conference. It's NOT TOO LATE!

Register: https://marfan.org/conference

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