Medical
We are committed to bringing about better health care for individuals who have an Ectodermal Dysplasia syndrome with on-going medical research.
To do this
- we are bringing awareness to more medical professionals than ever before,
- providing more information about Ectodermal Dysplasia to our families,
- maintaining a UK dental network,
- creating care pathways,
- supporting research.
We are supported by an eminent Medical Advisory Board who provide their time voluntarily.
Medical research into the Ectodermal Dysplasias continues all the time to help the lives of people who are affected by an Ectodermal Dysplasia syndrome and whilst there is no cure, research is being carried out into correcting the symptoms in X-Linked Hypohidrotic Ectodermal Dysplasia neonatal boys.
Whilst we do not have a multi-disciplinary clinic in the UK, our Medical Advisory Board are able to recommend professionals who have experience and understanding of Ectodermal Dysplasia.
For more information please contact the Society on 01242 261332 or email us.
Can you recommend a Doctor or Specialist?
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, opthalmologist etc. you have visited and 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 – info@edsociety.co.uk. We can then update our professionals list which we use to support our ED community.