Learn more about the risks and recommendations related to cholesteatoma for individuals with AEC, EEC, and Goltz Syndrome through a recent study published in the International Journal of Pediatric Otorhinolaryngology.| National Foundation for Ectodermal Dysplasias
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
For four days in October, 80 experts from around the world came together to chart a course for the future of ectodermal dysplasias and rare disease research. The ultimate goal was: “Translating Discovery to Therapy”. Find out how the International Ectodermal Dysplasias Research Conference will impact diagnosis and therapy development.| National Foundation for Ectodermal Dysplasias
Women who are exploring prenatal treatment for their son affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) now have an additional site to consider. The Edelife Clinical Trial has added a site at Cedars-Sinai Medical Center in Los Angeles (LA), California.| National Foundation for Ectodermal Dysplasias
Why I Volunteered to Participate in the Edimer Research Trials| National Foundation for Ectodermal Dysplasias
What causes skin or corneal erosions in AEC or EEC syndrome? The NFED has been collaborating with Dr. Maranke Koster and her research lab to find that answer and ultimately develop new treatments. Read the latest update and what they are learning!| National Foundation for Ectodermal Dysplasias
Meet Shirley Parraga of the Wake Forest School of Medicine, Department of Dermatology and research assistant to Dr. Maranke Koster. Shirley’s journey with the National Foundation for Ectodermal Dysplasias (NFED) exemplifies a deep commitment to advancing research and providing hope for families affected by rare skin diseases.| National Foundation for Ectodermal Dysplasias
