Annabelle's Challenge is the UK's leading charity for Vascular Ehlers-Danlos Syndrome (vascular EDS) working closely with the NHS Ehlers-Danlos National Diagnostic Service and proud to receive The Queen's Award for Voluntary Service.

 

We also promote research and host the annual worldwide awareness campaign REDS4VEDS Day. At the heart of the charity is Annabelle the inspiration behind our challenge to raise awareness and support for patients and families touched by vascular EDS across the UK and globally.

 

Freephone Helpline: 0800 917 8495

 

Vascular EDS is a life threatening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile. Patients are at risk of sudden arterial or organ rupture. Vascular EDS (previously known as Ehlers-Danlos type IV) is a rare type of Ehlers-Danlos syndrome caused by an alteration, also known as a mutation in the COL3A1 gene. 

 

COL3A1 gene is the instruction for making collagen type III a tough fibre-like protein that makes up a third of our body protein. When this gene is altered, it causes a lack or deficiency of this collagen making the connective tissue less effective, particularly in skin, lung, uterus, intestine and the vascular system. 

What is Vascular EDS?

Because many individuals with vascular EDS (vEDS) are identified only after a severe complication or death, it is likely it did not come to medical attention and therefore goes undetected.

 

At present, the life span for affected individuals is a median age of about 51 years (49 for males and 53 for females) but with a very large range from 10 years to 80 years. The prevalence is estimated as 1 in 50,000 to 1 in 200,000 people. 

 

An early diagnosis is critical to ensure that appropriate preventative measures are taken through medical testing and monitoring.

 

Our primary aim is to reduce the number of children and adults being undiagnosed or misdiagnosed by increasing awareness to the public and medical profession.

 

We also provide an essential helpline for advice and sign-posting to anyone who is concerned with a diagnosis of vascular EDS. Both our charity founders Jared and Sarah are always on hand to offer their support as and when required.

How can we help you today?

Our Challenge To Find Your Cure

UK's first ever vascular EDS conference

Annabelle's Challenge and The Ehlers-Danlos Support UK jointly hosted the first ever UK Vascular EDS Conference with 50 vEDS patients attending.

EDS National Diagnostic Service

The EDS National Diagnostic Service is a specialist service for individuals & families who are suspected to have complex Ehlers-Danlos syndrome.

The Lola-Grace Appeal

Help make a safe home for Lola-Grace, one of our youngest members diagnosed with vascular EDS. You could make a huge difference.

The Queen's Award for Voluntary Service

We are proud to receive The Queen's Award for Voluntary Service. Our founders attended Buckingham Palace for the Queen's Garden Party.

The Leys in memory of Carl George

Annabelle's Challenge receives support from The Leys School in Cambridge in memory of Carl George. Funds raised help us support families with vascular EDS.

Stay in touch

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Proudly supporting the NHS EDS National Diagnostic Service

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© Copyright 2013-2018 Annabelles Challenge. UK Registered Charity No.1157074 Office Telephone: 0161 797 4746 Email: info@annabelleschallenge.org