National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

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Participants Needed

XLHED-carrier Moms Needed:

Rally with NFED Today to Investigate a Potential Treatment for Children with XLHED

Edimer Pharmaceuticals is seeking expecting mothers who either suspect or know that they are XLHED carriers. Below is additional valuable information on the clinical trial that will help address specific questions you may have.
The Newborn XLHED Clinical Trial is evaluating whether EDI200 has any impact on the symptoms of children affected by XLHED, including the early development of teeth, sweat glands, hair follicles, and more.
Accepted trial participants are baby boys between two and 14 days old with genetic testing confirming a diagnosis of  XLHED .
Expecting mothers who suspect that they are carriers of XLHED can confirm through a simple genetic blood test. You can learn more about the GeneScreen program here.
Interested parents should contact Ramsey Johnson at 617.758.4305 or email him. Or, visit the for more information.


Gene for Goltz Syndrome Identified

Dr. Van den Veyver and her research team continue to enroll families with Goltz syndrome for their studies. If you or a family member are affected by Goltz syndrome and would like to participate in Dr. Van den Vyver's study, contact Mary Fete at the NFED.

The future research in Dr. Van den Veyver's lab will focus on understanding the normal function of PORCN and how its abnormal function leads to the features of Goltz syndrome. This will be done by analyzing the mouse model for Goltz syndrome that is being generated. The researchers will also study the gene's function and the effect of mutations in cell culture experiments. Now that the gene is known, it will also be important to continue to study the individuals who have Goltz syndrome to better understand how specific changes in the gene may relate to specific features.

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