Ectodermal Dysplasia Society
The Ectodermal Dysplasia Society provides information, advice and support; promotes education of the medical profession, local authorities, schools and general public; supports research; produces newsletters; liaises with their Medical Advisory Board, encourages a network for mutual support and maintains website.
The ED Society aim to:
- be the first port of call for all those seeking information on the Ectodermal Dysplasia provide personalised support to individuals and families affected by Ectodermal Dysplasia and
- provide personalised guidance to authorities in the UK (e.g. schools, social services, etc.) seeking to understand how to manage the effects of Ectodermal Dysplasia on individuals and families in their community
- raise the awareness of Ectodermal Dysplasia within the medical profession and other community officials in the UK (e.g. health visitors, social workers, etc.) in order to promote early diagnosis of babies and children with life-threatening symptoms Ectodermal Dysplasia (e.g. over-heating, breathing difficulties, feeding difficulties, etc.)#
Vision (What we want to be)
We would like every individual and family affected by Ectodermal Dysplasia is equipped with the knowledge needed to manage Ectodermal Dysplasia effectively and live life to the full; and that medical professionals have the information and understanding they need to support those affected. The ED Society seeks to raise funds to provide support services, equipment and grants to families affected by Ectodermal Dysplasia in the UK.
Ectodermal Dysplasia Society,
Unit 1 Maida Vale Business Centre,
Glos. GL53 7ER
Tel: +44 (0) 1242 261332
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