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     Ectodermal Dysplasia Society
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Events/Conference

Events

Become a member, which only takes a few minutes, and read about hugely successful fundraising events, such as:

Sophie and Ciara donating their hair to the ED Society to be made into a wig for one of our younger members, Alice. The girls had their long hair cut and styled by Vidal Sassoon in Bayswater and the wig was created by Darren Ware. The hair cutting event was broadcast by the BBC in December 2006 and the wig was presented to Alice during a follow BBC broadcast in August 2007.
Our hugely successful Christmas party at which 30 children were entertained for the afternoon with a surprise visit from Father Christmas. The children were in their element as, for once, they were in the majority and not the minority.They met children who looked like them and who all have very similar problems associated with Ectodermal Dysplasia.

 


 

Conference

From time to time we hold conferences and family get togethers with presentations from medical professionals. These events enable families to meet other families in similar situations, for ED children and their siblings to meet and for you to have one-to-one discussions with our Medical Advisory Board members, etc.

To ensure you are kept up to date with conference details please sign up to become a member which only takes a couple of minutes or alternatively email or telephone us direct; 01242 261332 email diana@ectodermaldysplasia.org.

Christmas Party

Every year we try to hold a Christmas Party either the first or second Saturday in December. This is always a great occasion enjoyed by everyone. In past years we have had around 140-150 people attending. There is entertainment a buffet and Father Christmas always puts in an appearance! It is a great way for the children and adults to meet know friends. The are always opportunities to chat to some of our Medical Advisory Borad on a one to one basis.

Details and registation forms are sent out in July with the newsletter. Any questions or if you require a registration form contact sue@ectodermaldysplasia.org

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