Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.| National Foundation for Ectodermal Dysplasias
4-Year-Old Wants to Bite Something With His New Dentures| National Foundation for Ectodermal Dysplasias
The biggest complaint we hear from families in the United States who are affected by ectodermal dysplasias is that their health insurance company or their employer-sponsored self-insured health plan has denied benefits for necessary medical care and treatment regarding teeth. Our mission is to put an end to this by advocating to Congress. Ensuring Lasting| National Foundation for Ectodermal Dysplasias -
Synonyms Anhidrotic ectodermal dysplasia Christ-Siemens-Touraine syndrome Forms X-linked hypohidrotic ectodermal dysplasia (XLHED) Autosomal recessive| National Foundation for Ectodermal Dysplasias
Synonyms EEC syndrome There are three different forms of EEC: EEC type 1, 2 and 3. Only one family has been identified with EEC 1 and 2. The most common| National Foundation for Ectodermal Dysplasias
Synonyms AEC syndrome Hay Wells syndrome Rapp Hodgkin syndrome is now considered a part of the disorder spectrum. The clinical findings of| National Foundation for Ectodermal Dysplasias
The EspeRare Foundation and Pierre Fabre Medicament seek to develop the first treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). They are| National Foundation for Ectodermal Dysplasias
