Information

Whether you have just received a diagnosis or have lived with ED all your life and are seeking information and support, it is the aim of the ED Society to help you find all the answers you are seeking.

The Ectodermal Dysplasia Society aims to:

• Obtain answers from Medical professionals to members’ specific questions
• Support families when they approach organisations such as Local Authorities, Social Services, etc., by putting together a personal report explaining very simply how ED affects them
• Liaise with Head Teachers, Health Authorities and medical professionals
• Help families get the right care for their child in schools, such as full or part time Carers, fans, air-conditioning, etc.
• Help more families obtain Disability Living Allowance, Disability Carers Allowance, etc.
• Support members in their fundraising
• Put people in touch with each other if requested
• Find pen pals for the younger members
• Help families obtain information regarding ante-natal testing
• Put the Society on the databases of Health Authorities, NHS Trusts, Health organisations, etc.
  

To find such information please follow the links on the left-hand side or for more in depth information please log-on to our membership area. Signing up to our membership area only takes a couple of minutes or alternatively email or telephone us direct; 01242 261332 email: diana@ectodermaldysplasia.org