Women who are exploring prenatal treatment for their son affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) now have an additional site to consider. The Edelife Clinical Trial has added a site at Cedars-Sinai Medical Center in Los Angeles (LA), California.
Researcher Spotlight: Shirley Parraga
Meet Shirley Parraga of the Wake Forest School of Medicine, Department of Dermatology and research assistant to Dr. Maranke Koster. Shirley’s journey with the National Foundation for Ectodermal Dysplasias (NFED) exemplifies a deep commitment to advancing research and providing hope for families affected by rare skin diseases.
The Stand Together Advocacy Conference Was Awesome
Our Stand Together Advocacy Conference was a whirlwind of excitement and unity! We welcomed not only our families but also care providers and members of other organizations. Our goal was to empower them to advocate for themselves and on Capitol Hill. Watch the highlight reel and read about our great success and new friends made!
Leading the World in Research for Ectodermal Dysplasias
The NFED is pioneering innovative research on several fronts to find answers to some of our many unanswered questions. Learn about efforts to establish prevalence rates, to develop treatment protocols for wound healing in the p63 syndromes, to establish best practices for eye treatment protocols for incontinentia pigmenti and more.
The Impact of Volunteers on the NFED
It’s Volunteer Appreciation Week and we have a lot of people to celebrate and thank. Our committed volunteers span the globe and lend their time, skills, and passion to make a real difference.
Mom of Teenager Reflects on New Prenatal Treatment for XLHED
Parents can get stuck on the “what ifs” in life and if things could have turned out differently. Becky Abbott reminisces about her son, Aidan’s journey with ectodermal dysplasia and her angst and stress. She can’t help but wonder how it all could have been different had the Edelife clinical trial been an option when she was pregnant.
Developing a Non-Invasive Way to Diagnose XLHED Prenatally
The NFED is funding research to help scientists develop a new way to diagnose XLHED prenatally. Because it’s non-invasive, it would not pose any risks for the pregnant mother. Learn about the procedure and how it would help mothers who are considering the EDELIFE clinical trial.
Missing Proteins May Contribute to Skin Fragility in AEC Syndrome
What causes skin or corneal erosions in AEC or EEC syndrome? The NFED has been collaborating with Dr. Maranke Koster and her research lab to find that answer and ultimately develop new treatments. Read the latest update and what they are learning!