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Carer benefits and legal services Ectodermal Dysplasia Society (Eds)

Contact us

About

Ectodermal Dysplasia Society (EDS) support individuals and families affected by ED, and promote awareness and understanding of ED.

Catchment area

Nation-wide

Target group

General public and professionals

Further information

Someone to talk toIf 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@edsociety.co.ukEDS 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

Referral method

Self-referral

This information was supplied by Serco Global Services on 1 April 2025.