community

The following texts are short press releases to summarize the concept and the activities of the Geneskin project. This short information is available in five languages (English, Italian, German, French and Swedish) and could be helpful e.g. for patients associations to be put on their homepages.

The following patients' associations are especially interested in taking an active part within "Geneskin" project by sharing their personal experience of genodermatoses with the Geneskin-scientists and the ethical experts. They are interested in cooperating with each other, exchanging news and know-how and profit from scientific progress.

The ED Society offers support by telephone and letter and attempts to link families where possible. It publishes a quarterly newsletter. The Society has over 300 members and:

provides information, advice, support to those affected by ectodermal dysplasia
promotes the education of the medical profession and general public
supports research
liaises with the Charity's Medical Advisory Board
supports members in negotiations for financial aid/other services
encourages network for mutual support

Our group consists of 140 ed-families in Germany, Austria and Switzerland. Patients and their families meet once a year for a weekend to get to know each other and to exchange news, to learn from experts and to discuss problems in groups. Children and young people get in touch with each other. We offer psychological support to those who are affected and try to link them with each other. We also offer support in questions of law and we help to deal with health insurance companies and other authorities. We encourage an exchange with other national ed-groups to be well-informed about the latest developments in the field of gene therapy and genetics.

Sandra Webb
XP Support Group
2 Strawberry Close
Prestwood
Great Missenden
Bucks HP 16 0SG
e-mail: xpsg@binternet.com

The XP Support Group works to support people with XP and other UV-related conditions and their families, by:

Providing information and advice over the telephone, via the website, or in person
Putting sufferers in contact with others who are affected
Publishing a newsletter three times a year
Providing grants for UV protective products
Organising an annual night-time camp called “Owl Patrol” for patients and their families or carers and providing respite care in a protected environment
Assisting families to attend Camp Sundown (a nit-time camp held once a year in New York State, USA). Last year two families attended from the UK.
Aims to raise public awareness of XP through an educational campaign.
Promotes research into XP by raising funds towards research carried out into the condition.

Ehlers-Danlos Support Group
p.o. Box 337, Aldershot
GU126WZ
Tel.: 01252-690940
Frances Gawthrop
Web: http://www.ehlers-danlos.org/

The Ehlers-Danlos Support Group UK aims to provide mutual support and information to families and medical professionals; raise awareness of EDS and encourage research into the Syndrome.