Kaitlyn Squibb knew all the ways that x-linked hypohidrotic ectodermal dysplasia affected her body. But, she’s finding strength as she learns how it impacts her emotions, too.
EspeRare Partners with Pierre Fabre to Develop Treatment for XLHED
After a challenging year, we are excited to share some good news – just in time for the holidays! The EspeRare Foundation announced a new partnership today that brings us closer to developing a potential treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). EspeRare and Pierre Fabre group have entered into an agreement to develop and…
Small Steps, Amazing Climbs
Even the tallest mountains can be scaled with enough small but purposeful steps Forever Forward. But not without decades of careful study, testing, steps forward, steps back, and the love and devotion of parents, families and you! Learn how you can help us with our campaign to advance research.
Genetic Counseling Students Learn Empathy as NFED Volunteers
Two genetic counseling students gained a valuable education when they volunteered to help families with ectodermal dysplasias. Their work was a win-win for the NFED and for them.
2019 Annual Impact Report
Since 1981, our mission has focused on families affected by ectodermal dysplasias. We are proud of the extraordinary accomplishments we have achieved in our nearly four decades. 2019 was no exception. Read to see the impact we made for our NFED family.
Potential XLHED Treatment Receives FDA Breakthrough Therapy Designation
We are excited to share with you a new development in bringing a therapy for x-linked hypohidrotic ectodermal dysplasia (XLHED) to clinical trial. EspeRare announced today that the U.S. Food and Drug Administration (FDA) has granted Breakthrough Therapy Designation to the protein replacement therapy called ER-004.
XLHED Natural History Study Findings Published
The NFED is proud to have funded the first comprehensive investigation of the natural course of XLHED, the most common ectodermal dysplasia, from birth until the age of five years.
Findings from this Natural History Study were recently published in the Orphanet Journal of Rare Diseases. Read more to learn what they found and how the data will be used for the upcoming clinical trial.
Collaborating With Leaders Around the World
In early October, NFED Executive Director Mary Fete met with leaders from eight other ectodermal dysplasia support groups/organizations in Germany. Find out what they talked about and what they have planned for 2-20-20!