We are committed to bringing about better health care for individuals who have an Ectodermal Dysplasia syndrome.
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.
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.