Want to learn exciting updates on the Edelife Clinical Trial, a potential prenatal treatment for boys affected by x-linked hypohidrotic ectodermal dysplasia (XLHED)?
In this 45-minute informational webinar, you’ll learn a brief history of the NFED’s XLHED research and treatment efforts, hear the latest information (as of August 19, 2025) from Dr. Pedro Sanchez and Dr. Kathy Grange, leading experts in the Edelife clinical trial, and from Beth, a current trial participant sharing her personal experience. Discover how enrollment in the clinical trial works, and what the process would look like for you or a loved one.
You will learn:
- a brief history of the NFED’s XLHED research treatment efforts
- the cause of XLHED
- the purpose of the Edelife Clinical Trial
- who can take part in the trial
- what ER004 treatment is how it is provided
- where clinical trial sites are located
- Participant Beth’s experience in the trial for her son, Matthew
About the Experts
Kathy Grange, MD, is a Professor of Pediatrics in the Division of Genetics and Genomic Medicine, Department of Pediatrics at Washington University School of Medicine and St. Louis Children’s Hospital in St. Louis, Missouri. She has been a member of the NFED Scientific Advisory Council since 2006. She is the primary investigator at the St. Louis Edelife Clinical Trial site.
Pedro Sanchez, MD, MSCE, FAAP, FACMG is the Director of Clinical Genetics at Cedars-Sinai Medical Center. His expertise spans pediatrics, genetic and genomic disorders, craniofacial genetics, and the evaluation of undiagnosed diseases. He is a clinical lead for the Los Angeles Edelife Clinical Trial site.
Disclaimer: This webinar is not intended as a substitute for medical advice. Only a healthcare provider with a full medical history may determine the proper treatment options. Opinions shared do not necessarily reflect those of the NFED.
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