The NFED is excited to launch the Ectodermal Dysplasias Registry! By joining, you can help researchers and doctors better understand these rare conditions, improve treatments, and shape the future of care. Every story shared adds to our knowledge and brings hope for all families affected by ectodermal dysplasias.
Four Boys Who are Changing the Story of XLHED
Four little boys helped change the future of XLHED. Their families took brave steps. Researchers worked hard. And today, these boys are growing, playing sports, and sweating normally. Want to feel hopeful about what’s ahead? Read how Maarten, Linus, Finley, and Bennett are doing and how your family might qualify for the prenatal treatment they received.
NFED Funds Two Ectodermal Dysplasias Research Projects
The NFED continues to invest in research that brings hope to families. Two new $25,000 grants support studies on fragile skin in AEC syndrome and on dental bone health. Learn more about these studies and how they provide hope for better treatments for people with ectodermal dysplasias.
How Men With XLHED Can Help the Edelife Clinical Trial
Talking about genetic conditions in families can be hard. Some families, like Peter and Beth’s below, may be able to trace x-linked hypohidrotic ectodermal dysplasia (XLHED) back to the 1850s. Others may be learning about it for the first time. Either way, if you are a man affected by XLHED, your female relatives might not…
Hope for Healing Fragile AEC Skin
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.
How Matthew Can Help Change the Future of XLHED
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.
Conference Advances Research and Treatment for Incontinentia Pigmenti
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.
XLHED Research Success: The Power of Family Participation
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!