Paul grew up feeling different and was bullied for his teeth. He followed a dark path for many years before deciding he wanted a different life. Today, he’s sober, married and helping others. His journey is honest and hopeful and living proof that no matter your past, your future can still be bright.
Join Our Team: Director of Research
Be the Bridge Between Science and Hope The National Foundation for Ectodermal Dysplasias (NFED) is seeking a passionate, collaborative leader to serve as our Director of Research. This is your opportunity to make a lasting impact in the rare disease community by connecting groundbreaking research with the families who need it most. About This Role…
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.
Top 5 Reasons You Can’t Miss the NFED Family Conference This Year
Thinking about coming to the Family Conference? This blog shares five big reasons you won’t regret it—from finding your family and learning from experts to giving your child true belonging. Add in hope, hugs, pool parties, and an ’80s dance bash, and you’ve got a summer highlight you’ll never forget.
Dr. Clayton Butcher Credits Families for Teaching Him About Ectodermal Dysplasias
Dr. Clayton Butcher is that rare doctor who specializes in internal medicine and pediatrics. That makes him a great resource for individuals affected by ectodermal dysplasias as they transition from childhood into adulthood. Learn how Family Conference has impacted him as a doctor and in his career.
The Hot Kid Turns Ectodermal Dysplasia Into His Super Power
What if the thing that held you back became your greatest edge? From overheating on the soccer field to describing himself as “The Hot Kid,” Finnegan shares how he handled being bullied and transformed it into something positive.
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.
Five New Health Professionals Join NFED Councils
The NFED couldn’t do our work without caring doctors and dentists who share their time and expertise. We’re excited to welcome five new care providers to our councils. Their knowledge helps direct our research, shape our programs, strengthen our education, and support families affected by ectodermal dysplasias every day. Meet our new Council members!