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
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
Our Staff Mary is our fearless leader who brings two decades of nursing and case management experience and her passion to make a difference. She oversees| National Foundation for Ectodermal Dysplasias
Volunteer Spotlight: Our Folders, Stuffers and Filers Oh My| National Foundation for Ectodermal Dysplasias
