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     Ectodermal Dysplasia Society
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What we do

We support individuals and families affected by Ectodermal Dysplasias (ED), and promote awareness and understanding of ED to the general public and professionals.

We seek to achieve this in the following ways:

Someone to talk to
If you or a member of your family has recently been diagnosed with ED, you may wish to speak directly to someone who understands your situation and can reassure and advise you about the future. If you would like to talk about any aspect of ED, please call Diana Perry on 01242 261332. Diana works on a voluntary basis for the charity and so, if she is not in the office when you call, please leave a message and she will call you back as soon as possible. Alternatively, if you prefer to email Diana, she can be reached at diana@ectodermaldysplasia.org

Our website
On our website we aim to provide comprehensive information about ED which is useful to individuals and families, medical professionals and others who seek to know more about this rare genetic condition. We will regularly update our website with new information such as the latest newsletter, research projects, fundraising events, etc.

Our newsletter
EDlines (ED lines) is produced 4 times a year. Each newsletter contains personal stories from our members and others wishing to contribute, fundraising events, news from the Trustees, articles written by the Medical Advisory Board members and a News & Views section bringing ideas, tips and items of interest.

Information Fact Sheets
There are numerous fact sheets available which provide information about the different aspects of ED and how different parts of the body can be affected such as dental, nasal, respiratory, ears, nails and hair problems; lack of temperature control, day to day management, and some of the ED syndromes. These fact sheets can be found on our website - please register as a member to get access.

Click here to download a Membership Application form.

Click here to complete the Membership Application form online.

Get togethers
We are hoping to organising a network of families around the UK who will hold informal get togethers in their area. There is no better way to share information or to allow children to see that they are not alone than by spending some fun time together. If you can help please contact the ED Office on 01242 261332 or email sue@ectodermaldysplasia.org.

Advice on essential paperwork
We can help by:

  • obtaining answers from Medical professionals to members' specific questions

  • liaising with Head Teachers, Health Authorities and medical professionals

  • assisting families get the right care for their child in schools, such as full or part time carers, fans, air-conditioning, etc.

  • assisting families to obtain Disability Living Allowance, Disability Carers Allowance; assisting in the Statementing process and helping with appeals and tribunals

  • supporting members in their fundraising

  • putting people in touch with each other if requested

  • finding pen pals for the younger members

  • assisting families obtain information regarding ante-natal testing

Medical advice
The EDS is very fortunate to be supported by a Medical Advisory Board (MAB) of professionals who have many years experience of the Ectodermal Dysplasias. If you have any specific questions, please contact us and we will consult the Board to help provide the information you are seeking.

Fundraising
We raise funds primarily to allow the ED Society to exist. Whilst all the Board of Trustees donates their time voluntarily, we do employ a part-time salaried Administrative Assistant to help manage the day to day running and the costs associated with the support that we provide. If you would like to help raise much needed funds by organising an event we will be very happy to support you. Please go to the website section on Fundraising for more information or contact sue@ectodermaldysplasia.org.

Raising Awareness
We aim to promote awareness and understanding of ED to both the medical profession and the general public.



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