Find out what the National Foundation for Ectodermal Dysplasias recently published in research, will be announcing about the Ensuring Lasting Smiles Act and is planning for 2019.
My Son Has Only Six Teeth
Sheltered as a child because of ectodermal dysplasia, Beth Orchard is raising her kids differently. This advocate is giving her children the same opportunities as kids who can sweat and eat normally. She’s taking bold steps to make a difference and wants you to join her.
Ultrasound-Based Diagnosis of X-Linked Hypohidrotic Ectodermal Dysplasia In Mid-Pregnancy
Researchers identified a way to diagnose x-linked hypohidrotic ectodermal dysplasia noninvasively. Learn how and why it’s imporant for a new potential treatment.
Update on the XLHED Natural History Study
The NFED granted funding to Dr. Holm Schneider to help him finish the XLHED Natural History Study. Learn why this data is critical for the prenatal trial.
Advice on Treatment with Dental Implants in Hypohidrotic Ectodermal Dysplasia
Researchers have learned that the bone found in the jaws of individuals affected by hypohidrotic ectodermal dysplasia is extremely hard and can cause complications for dental surgery. Learn what your dentist should know if you are considering dental implants.
Incontinentia Pigmenti Researchers to Study Heart Problems
Researchers are studying whether certain heart problems might be associated with the rare genetic condition known as incontinentia pigmenti (IP). Researchers are seeking affected individuals to participate in their study.
Scientists Search for Skin Erosion Therapies
Skin erosion can be life-threatening for people affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. Two research labs are studying to understand the molecular defects that lead to skin erosions so they can ultimately develop therapies.
Prenatal Treatment Restores Sweating in XLHED
Dr. Schneider and his team of investigators have published their groundbreaking research results in a “Prenatal Correction of X-Linked Hypohidrotic Ectodermal Dysplasia.” We are thrilled to share with you key highlights from their research, what it means for our families affected by XLHED, and the next steps.