About us

Annabelle's Challenge is the leading charity for vascular Ehlers-Danlos syndrome in the UK, we also provide support globally.

 

Our charity is totally focused on raising awareness to the general public and medical profession to help aid an early diagnosis and prevent misdiagnosis of vascular EDS a rare life limiting genetic condition.  We also provide support to patients and families touched by vascular EDS.

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.

 

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 prevelance is estimated as 1/50,000 to 1/200,000.   

 

It is a rare genetic condition and therefore many health professionals will not have seen someone with this diagnosis.  

 

The diagnosis of vascular EDS carries with it the life threatening risks of blood vessel and organ rupture, sometimes in childhood.

 

The clinical features typical of vascular EDS may be subtle or absent, making diagnosis difficult particularly where there is no positive family history. Sudden death in the third or fourth decade of life can be the presenting feature.

 

The aim of Annabelle's Challenge is to raise awareness, support patients and families affected by vascular EDS and to encourage the medical profession to progress further with research into finding a cure.

 

If you are concerned about vascular EDS or require any further information please contact us we are here to support you.

Helpline: 0161 207 8337

Our objectives

Education: To advance the education of the general public and medical profession in all areas relating to vascular Ehlers-Danlos syndrome.

 

Research: 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 Ehlers-Danlos syndrome.

 

Support: To promote and protect the physical and good mental health of sufferers of vascular Ehlers-Danlos syndrome through the provision of financial assistance, support, education and practical advice.

Where does your money go?

Your donations help us to raise awareness of life threatening vascular EDS and support individuals and families who are affected by the condition. 

 

100% of all funds raised directly helps our charity to carry out its objectives for the public benefit. As a small charity we do not have any significant overheads or staff to pay so you can be sure every penny raised goes a long way.

 

Funds raised also help us to provide advice, support and education of the condition, we also provide grants and free MedicAlert UK membership for diagnosed patients.

 

The amazing funds raised are put to very good use to help towards;

  • Provision of Free MedicAlert UK membership and discounted jewellery to vascular EDS patients.
  • Patient support pack & counselling working closely with the NHS EDS Diagnostic Service based in London & Sheffield.
  • UK's first vascular EDS conference took place in May 2017.
  • Restricted fund for potential future research.
  • New awareness leaflets and booklets.
  • Volunteer 'Charity Champions' to help deliver awareness of vascular EDS at a local level across the UK. 

 

We also support the local community and are delighted to sponsor the 'Bury Thunder' netball team and proud to be a Bury Mayoral chosen charity.

Vascular EDS awareness folded leaflet
Vascular EDS Awareness Leaflet.pdf
Adobe Acrobat document [914.7 KB]

Please note Annabelle's Challenge does not provide medical advice, you should contact your local doctor with any medically related concerns or questions.

 

The information contained on this website is obtained from various reliable sources and should not be construed to represent opinion or advice by Annabelle’s Challenge and/or it's trustees.

 

Annabelle's Challenge values your support and promises to respect your privacy. The data we gather and hold is managed in accordance with the Data Protection Act (1998).

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Our office hours

Monday - Friday09:00 - 18:00
Reg Charity No. 1157074

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© Copyright 2013-2017 Annabelles Challenge. UK Registered Charity No.1157074 Tel: 0161 207 8337 Email: info@annabelleschallenge.org