Celine Barry

Transition at Action Duchenne

Celine Barry's Professional Contact Details

Email (Verified)

****@actionduchenne.org

Get Email Address

+44 20 8556 9955

Location

London, England, United Kingdom

Company

Action Duchenne

Person Seniority

entry

Celine Barry's Current Company Details

Action Duchenne

England, United Kingdom • 18 Employees

fund-raising

Action Duchenne is a parent and patient led registered charity that exclusively funds research and fights on behalf of families living with Duchenne. Mission: The mission of the charity is to fund developments in medicines and treatments to enable a cure to be found for the disease while raising awareness of and campaigning for improvements and change in patient health and care provision. Duchenne is a severe and complex genetic muscle wasting disease. The condition is diagnosed in early childhood and affects mainly boys. Children are often in a wheelchair at the age of 10, and by their teenage years many are totally paralysed in need of 24 hour care and suffer respiratory, heart and spinal problems. Without effective health provision most young men die by their late teens or early 20s. The condition is life limiting. Currently there is no cure. Duchenne remains the largest genetic child killer. Duchenne is random in nature, it can occur unexpectedly in any family. Action Duchenne is unique in that it is the only charity that works exclusively with Duchenne. The charity is parent led with the Board of Trustees and CEO all affected directly by Duchenne.

Founded Year

2001

Organization Website

actionduchenne.org

Organization Languages

English

Alexa Ranking

688273

Current Technologies

123-reg dns

gmail

google apps