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…

Marching Toward a Cure!

Incontinentia pigmenti is a type of ectodermal dysplasia with challenging and complex symptoms. We need more research to understand it better, develop treatments and help parents like Shari Ezell, realize their dreams for their children.

What are your hopes and dreams?

What do you hope and dream for? Read what six families dream about and NFED’s research campaign to make those dreams come true.

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.

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.

Testing a Non-invasive Way to Diagnose XLHED In Utero

Dr. Angus Clark is investigating a new, noninvasive way to diagnose x-linked hypohidrotic ectodermal dysplasia in utero. His findings could help facilitate the upcoming clinical trial for treatment. We are proud to fund this work.