Freephone Helpline: 0800 917 8495

General Enquiries: 0161 763 8741 

Annabelle's Challenge is the UK's leading charity for Vascular Ehlers-Danlos Syndrome working with the NHS EDS National Diagnostic Service.

 

At the heart of the charity is Annabelle who is the inspiration behind "Our Challenge To Find Your Cure" raising awareness and support for patients and families touched by vascular EDS.

 

Annabelle's Challenge are proud recipients of The Queen's Award for Voluntary Service, The MBE for volunteer groups.

 

We also host the annual global awareness campaign REDS4VEDS Day which takes place on the third Friday of May.

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. 

Blackpool Family Retreat Weekend

What is Vascular EDS?

vEDS Symptoms can include a history of easy bruising and thin translucent skin with visible veins.

 

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. 

How can we help you today?

Our Challenge To Find Your Cure

World's first ever vascular EDS conference

Annabelle's Challenge and The Ehlers-Danlos Support UK jointly hosted the first ever 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.

Blackpool Family Retreat Weekend

30 families touched by vascular EDS attend the first ever vascular EDS family weekend in Blackpool.

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.

Annabelle's Challenge Charity pot stolen

Sadly one of our charity pots was stolen from a shop in Bolton sparking over 4 million views online to try and catch those responsible.

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 Helpline 0800 917 8495 Email: info@annabelleschallenge.org