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What We Do

The ED Society support individuals and families affected by Ectodermal Dysplasia, medical professionals, schools, etc., and promote awareness and understanding of Ectodermal Dysplasia 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 have recently been diagnosed with an Ectodermal Dysplasia syndrome, you may wish to speak directly to someone who understands your situation and can reassure and advise you about the day to day management, so please call 01242 261332 or 07774 465712, or you may prefer to email us.

The website

The ED Society website aims to provide comprehensive information about Ectodermal Dysplasia which may be 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, articles, fundraising events, etc.

The newsletter ‘edlines’

This is produced several 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 members of the Medical Advisory Board, etc.

Information Fact Sheets

There are numerous fact sheets available which provide information about the different aspects of Ectodermal Dysplasia and how different parts of the body can be affected such as teeth, nose, breathing, ears, nails and hair problems; lack of temperature control, day to day management, and some of the Ectodermal Dysplasia syndromes. These fact sheets can be found on our website and are available to download.

What we can do for you?

These are some of the things we can do for you…

  • write individual personal reports for your doctors, schools etc.,
  • assist by writing letters and reports to help regarding rehousing,
  • write appeal letters for Disability Living Allowance or Personal Independent Payment,
  • assist when applying for a Blue Badge,
  • assist when applying for an Education Health Care Plan (EHCP),
  • provide a School Care Plan specific to Ectodermal Dysplasia,
  • ensure schools are providing the correct care for your child such as a fan, having access to drinking water and water for cooling at all times, etc., by providing letters and, liaising with SENCO and the school,
  • attend tribunals and school meetings with you,
  • liaise with dentists or provide you with information to ensure you are not continually made to wait until your child is older before any treatment is carried out,
  • ensure you have been given all the dental options for you or your child allowing you to make informed decisions; we have an excellent dental network around the UK,
  • talk with you regarding the different symptoms of Ectodermal Dysplasia,
  • provide t-shirts, leaflets, banners and support for fundraising activities you may be carrying out for us,
  • liaise with medical professionals for assistance and advice on you or your child’s care,
  • discuss genetics with you or your adult children to help informed decisions to be made,
  • provide an annual get together for families to get to know each other and have the opportunity of speaking with the Medical Advisory Board on a personal basis,
  • assist with the transition to University and Student Disability Finance,
  • help you speak with others who have experience of Ectodermal Dysplasia via the ED Society’s Facebook page,
  • talk with you regarding lack of temperature control and behavioural problems which are connected for many individuals with Ectodermal Dysplasia.

The list goes on …… if we do not have the answers for you we will find them!