Annabelle's Challenge Vascular EDS Charity

We are a Registered Charity No 1157074.

Annabelle's Challenge was created on 11th January 2013 to support individuals and families affected by vascular EDS through awareness campaigns, fundraising and general information..

Become a member today for FREE, to apply visit: https://www.annabelleschallenge.org/join/

ABOUT US
Annabelle Griffin was diagnosed with Vascular Ehlers-Danlos Syndrome in December 2012 when she was only 3 years old; it is a life threatening and incurable genetic disorder.

Annabelle was one of the youngest in the UK to have been diagnosed with vascular EDS.

The major risks for patients with vascular EDS are arterial (including aortic) dissection, rupture and aneurysm which accounts for the majority of deaths in vascular EDS. Sudden death in the third or fourth decade of life can be the presenting feature.

Vascular EDS is a genetic condition caused by an alteration, also known as a mutation, in a gene called COL3A1. This gene is the instruction for making collagen type III. When this gene is altered it causes a lack or deficiency of this collagen. This leads to disordered packing of collagen fibres making the connective tissue less effective, particularly in blood vessels, hollow organs and the skin

It is a rare condition and therefore many health professionals will not have seen someone with this diagnosis. Vascular EDS was previously known as EDS type 4 and effects 1 in 250,000.

WHAT WE DO
The primary aim of Annabelle's Challenge is to reduce the number of people being undiagnosed or misdiagnosed by increasing public awareness and to encourage the medical profession to progress further with research into finding a cure.

OUR OBJECTIVES
To advance the education of the general public and medical profession in all areas relating to vascular EDS.

The relief of sickness and preservation and protection of good health by the provision of funding for the development of research and early diagnosis of vascular EDS and to publish the useful results of that research.

To promote and protect the physical and good mental health of sufferers of vascular EDS, their families and carers through the provision of financial assistance, support, education and practical advice

https://www.annabelleschallenge.org/