PO Box 748
Tel: 0208 736 5604
Ehlers-Danlos Support UK has the following aims and activities:
- Helps, encourages and informs those with Ehlers Danlos syndrome (EDS) and their family members.
- Links members with each other for mutual support and the exchange of ideas.
- Publishes booklets on EDS and information sheets on various aspects of EDS and related subjects (see below).
- Provides key-facts medical cards on EDS (a small plastic card which gives details of EDS on one side and, on the other, advice to health professionals attending the bearer of the card).
- Maintains a list of specialists who have an interest in, and experience of, the condition.
- Produces a newsletter, Fragile Links, with medical articles and updates, items from members and news.
- Holds a biennial national day conference and regional meetings.
- Endeavours to heighten awareness of EDS among the medical professionals and to encourage and support EDS research.
A literature list is available. Publications include the following:
- Ehlers-Danlos Syndrome (good, basic 30 page booklet)
- The Management of Ehlers-Danlos Syndrome
- Pregnancy & Childbirth in Ehlers-Danlos Syndrome
- Difficulties in School/College for Young People with EDS
- Learning to be Different (written for 4-7 year olds)
- So, You Have EDS Too (written for 8-13 year olds)
- Guide for Teachers
Last updated on 16/11/2012