Finding a Care Provider

The ectodermal dysplasia syndromes are a complex group of disorders with symptoms ranging from mild to severe. Because of this complexity, there is no one care provider who can treat all of the symptoms of ED. A doctor or dentist need not be an expert in the ED syndromes to be able to provide quality care. People affected by ED simply need to find a practitioner who is willing to learn about the disorder and work in conjunction with other care providers in providing a complete treatment plan. To that end, NFED provides information packets for EDucating members of the dental and medical communities.

If an individual affected by ED is having difficulty finding a cooperative care provider, the NFED can possibly provide useful information. The NFED maintains a database of medical and dental professionals mainly in the United States who have been recommended by NFED families or other clinicians. The NFED does not recommend nor endorse these individuals. It simply relays the information that has been given by a family or clinician. 

If you would like to receive such a listing of providers please e-mail the NFED.  In your e-mail, please include that you would like a listing of care providers in your area.  Don't forget to include your address. 
If a someone with ED has had a positive experience with a particular doctor or dentist, please contact the NFED with the information. The care provider may be able to help other affected individuals who live in that area.