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 prevalence 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.

Freephone helpline: 0800 917 8495

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.

Our goals

During January 2018 we surveyed our members to gain their feedback on the charity and focus areas going forward.

 

We have utilised the survey results and taken on board the concerns of our patients and families to implement a clear vision for the charity over the next three years.

 

We aim to deliver 4 key goals by 2021: 

 

1. Increase awareness about vascular EDS among medical professionals, researchers, and clinicians.

 

2. Encourage collaboration across all 21 NHS Genetic Services to improve patient care.

 

3. Focus on the natural history of vascular EDS including the provision of a patient registry.

 

4. To fundraise £200,000 ($278,000) to help deliver sustainable services for patients, families, and health care professionals.

Where does your money go?

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

 

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 & counselling working closely with the NHS EDS Diagnostic Service based in London & Sheffield
  • UK's first vascular EDS conference held in May 2017 with another planned for May 2020
  • Family Retreat Weekend planned for September 2018 
  • Restricted fund account for potential future research
  • Grant funding
  • Freephone Helpline
  • New awareness leaflets and booklets
  • Patient support pack 

We also support our local community in Bury, the hometown of our charity and delighted to sponsor the 'Bury Thunder' netball team and proud to be a Bury Mayoral chosen charity for 2016/17.

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

Proudly supporting the NHS EDS National Diagnostic Service

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).

Checkout

Helpline: 0800 917 8495

Our office hours

Monday - Friday09:00 - 18:00
Office Tel: 0161 207 8337

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© Copyright 2013-2018 Annabelles Challenge. UK Registered Charity No.1157074 Office: 0161 207 8337 Email: info@annabelleschallenge.org