People often ask, "How many individuals are affected by ectodermal dysplasias?" It’s a challenging question to answer, since they are rare conditions. A team of NFED researchers now has an answer. Read to learn just how prevalent ectodermal dysplasias are and why these numbers are important.| National Foundation for Ectodermal Dysplasias
For years, NFED has championed research to find treatments for AEC syndrome’s painful skin erosions. Now, Prof. Caterina Missero’s lab offers new hope. Her team discovered a way to bypass the damaged protein causing skin breakdown. Potentially, it could transform care and improve life for those living with this rare condition.| National Foundation for Ectodermal Dysplasias
Bringing people together is what the National Foundation for Ectodermal Dysplasias does best—especially when advancing research. This is more than science; it’s about saving lives. Read what happened at our recent Complex Wound Healing Conference in Philadelphia.| National Foundation for Ectodermal Dysplasias
Discover the incredible journey of XLHED research, where dedicated families and tireless efforts have led to life-changing breakthroughs. This inspiring story highlights how your participation can help shape the future of XLHED treatments. Don’t miss it!| National Foundation for Ectodermal Dysplasias
Curious how a baby can help change the future of a rare genetic condition? Read how Beth and Peter joined a groundbreaking clinical trial while Beth was still pregnant, giving their son, Matthew, early treatment for XLHED. It’s an emotional, uplifting story about science, family, and hope for generations to come.| National Foundation for Ectodermal Dysplasias
At the NFED, we recognize the urgent need for more research on rare conditions like incontinentia pigmenti (IP), which has received limited focus in the scientific community. We collaborated with Oregon Health Sciences University to host the NFED Incontinentia Pigmenti Conference: Translating Discovery to Therapy, which brought together researchers, doctors, and families to advance IP care.| National Foundation for Ectodermal Dysplasias
Dr. Schneider and his team of investigators have published their groundbreaking research results in a “Prenatal Correction of X-Linked Hypohidrotic Ectodermal Dysplasia.” We are thrilled to share with you key highlights from their research, what it means for our families affected by XLHED, and the next steps.| National Foundation for Ectodermal Dysplasias
Learn more about the risks and recommendations related to cholesteatoma for individuals with AEC, EEC, and Goltz Syndrome through a recent study published in the International Journal of Pediatric Otorhinolaryngology.| National Foundation for Ectodermal Dysplasias
Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.| National Foundation for Ectodermal Dysplasias
At the National Foundation for Ectodermal Dysplasias (NFED), we understand the pressing need for research into rare disorders like incontinentia pigmenti (IP). This complex form of ectodermal dysplasia has garnered little attention in the research community, and we’re committed to changing that with the Incontinentia Pigmenti Conference: Translating Discovery to Therapy.| National Foundation for Ectodermal Dysplasias
For four days in October, 80 experts from around the world came together to chart a course for the future of ectodermal dysplasias and rare disease research. The ultimate goal was: “Translating Discovery to Therapy”. Find out how the International Ectodermal Dysplasias Research Conference will impact diagnosis and therapy development.| National Foundation for Ectodermal Dysplasias
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.| National Foundation for Ectodermal Dysplasias
Why I Volunteered to Participate in the Edimer Research Trials| National Foundation for Ectodermal Dysplasias
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!| National Foundation for Ectodermal Dysplasias
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.| National Foundation for Ectodermal Dysplasias
