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.
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.
News from the XLHED Dog World
X-Linked hypohidrotic ectodermal dysplasia dogs were administered recombinant ectodysplasin in utero at different times to determine its impact on the development of hair, skin and tooth development. The research team found significant results.
Launching a Major Research Campaign
We stand at an unprecedented time in history. Preliminary findings from research show great promise for eradicating two symptoms of the most common k ind of ectodermal dysplasia. It’s extraordinary! But without funding, this research study and others will not continue. We are launching the “Impact Cures, Now” campaign to raise $300,000 in the next three years for ectodermal dysplasias research.
XLHED Treatment: From Setback to Renewed Hope
I am excited to share with you the latest news in our journey to develop a treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). EspeRare, a not-for-profit drug developer based in Switzerland, is picking up where Edimer Pharmaceuticals left off! EspeRare is exploring the possibility of re-launching the development of ER-004 (formerly known as EDI200) as…
A Summer of Ectodermal Dysplasias Research
It’s definitely a busy summer for the National Foundation for Ectodermal Dysplasias (NFED)! If you follow our communications, you know we are going to be in Washington D.C. in July for the Family Conference and a historic first, Ectodermal Dysplasias Advocacy Day on Capitol Hill. Those are both incredibly important and major events for us….