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     Ectodermal Dysplasia Society
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About the ED Society

Diana Perry  

Welcome from our Chief Executive, Diana Perry

As 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 ED.

When my first child was diagnosed in 1993 I contacted the Ectodermal Dysplasia Support Group which was established in 1984 by two mothers of children with ED and received some information, but a lot of telephone support which I desperately needed. However, I soon realised that there was very little information available to ordinary people like me that could be easily understood and which I could relate to, although there was a lot more for professionals. I felt I wanted to do something about this and so joined the Support Group. In 1996 I took up leading the group which was renamed The British Ectodermal Dysplasia Group with a membership of 25. With the help of David Wyatt a website was created and over the next four years the group began to grow. A logo was created and the EDlines newsletter was launched.

I began to realise that more health officials, professionals and the public needed to know about ED and that it was the job of the Support Group to bring this awareness. To do this we produced a leaflet explaining about Ectodermal Dysplasia and sent it to all Area Health Authorities and NHS Trusts within the UK. With the internet becoming more widely used the group then linked to many medical and health authority websites thereby bringing in more and more queries and new members.

During the period 1998 to 2000 a Medical Advisory Board was created. It was felt that such a Board would add creditability to the Group and would play a significant part in providing help to identify other medical professionals who may be experienced with ED, as well as to help identify researchers who may be interested in pursuing research into Ectodermal Dysplasia.

We then formed a Steering Group who would help move the Support Group on to becoming a Charity, this was achieved in 2001.

Becoming a Charity enabled us to:-

• further the advancement of 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 us proper status for fundraising from the general public

• to give us more stability

• to maintain a positive supportive network of parents, individuals, families and professionals in order to share ideas, experiences and give emotional support
It is my personal intention to continue to help the hundreds of individuals and families in search of support, information, direction, advice, etc. So please, for whatever reason you found our website and no matter how long or short your queries or concerns are, contact me either by email, letter or telephone and I will do my best to help you.


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