We love to hear positive stories about any help and support you receive from a GP or specialist.
But sadly, many professionals have never heard of Ectodermal Dysplasia and this puts a huge amount of stress and frustration on our ED families.
We have been fortunate enough to acquire an extensive professionals list over the years to help you, and have a knowledgeable, supportive, Medical Advisory Board.
The Medical Advisory Board give their time voluntarily, for which the ED Society is most grateful. They assist us in helping to find medical professionals close to your home who have an understanding of Ectodermal Dysplasia. We are very lucky to be in close liaison with them to help answer the many questions raised.
But, we still want to make this better –
Maybe you can tell us a great dentist, dermatologist, geneticist, ophthalmologist etc. you have visited who has knowledge and understanding of ED and from whom you have received the support and treatment you needed?
We would really appreciate if you could answer the questions below or simply email us any information you have – firstname.lastname@example.org. We can then update our professionals list which we use to support our ED community.