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About Us

Welcome from our Chief Executive and Founder, Diana Perry    

Chief Executive of Ectodermal Dysplasia SocietyAs a mother of two children with Ectodermal Dysplasia I know only too well what it is like to receive the initial diagnosis, to be on an emotional rollercoaster, to experience the feelings of guilt, etc., and what it is like coping with the day to day management of Ectodermal Dysplasia.

To help people like you, families, friends, medical and health professionals, I established the Ectodermal Dysplasia Society in 1996.

During the period 1998 to 2000 a Medical Advisory Board was created. It was felt that such a Board would add creditability to the Society and would play a significant part in providing help to identify other medical professionals who may be experienced with Ectodermal Dysplasia, as well as to help identify researchers who may be interested in pursuing research into the Ectodermal Dysplasias. At the same time a Board of Trustees was established and charitable status was achieved in 2001.

Becoming a Charity enabled us to:
 

  • further advance education of the medical profession and the general public into Ectodermal Dysplasia and its implications for the family
  • aid the promotion of research into the causes, effects, treatment and management of Ectodermal Dysplasia and to be informed of the results thereof
  • make it easier for us to obtain funds from grant-making trusts and local government, and to give the Society proper status for fundraising from the general public
  • provide more stability
  •  maintain a positive support network of parents, individuals, families and professionals in order to share ideas, experiences and give emotional support.

It is my personal intention to continue helping the hundreds of individuals and families in search of support, information, direction and advice. So please, for whatever reason you found our website and no matter how long or short your queries or concerns are, please contact the ED Society either by email, letter or telephone 01242 261332 and we will do our best to help you.