At eight years old, this volunteer met other people with ectodermal dysplasia for the first time at an NFED Family Conference. That feeling of belonging inspired her as an adult to give back. Read how speaking on panels, mentoring teens and helping families turned a childhood memory into a meaningful way to serve others.
Small NFED Fundraisers, Real Impact
Our families have found creative ways to fundraise for the NFED doing things that they love. Find out how they made friends, built community, and raised awareness along the way. Get inspired to have your own small fundraiser and make an impact!
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.
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!
7 Reasons Why Youths Should Advocate for ELSA
Kids and teens have powerful voices and they can help change lives. Learn why speaking up for the Ensuring Lasting Smiles Act matters, how it affects real families, and how young advocates can make a big difference.
Celebrating 25 Years of the Halloween Bash Community
Celebrate 25 years of the Halloween Bash with us! This amazing event started as a party and grew into a huge community of families and friends helping the NFED. Come learn how it sparked big changes, supported research and brought people together. Read how this fun event made a huge difference for people affected by ectodermal dysplasias.
Meet Dr. Brad Amendt: Researcher, Advocate, and Innovator in Ectodermal Dysplasias
The NFED is pleased to welcome Dr. Brad Amendt to our Scientific Advisory Council! With decades of research experience and a big heart for helping families, he’s bringing fresh ideas, cool regenerative therapies, and a passion for collaboration to push forward care and hope for our ectodermal dysplasias community.
A Chance to Sweat: A Grandfather’s Legacy, A Baby’s Hope
What if a decision made decades ago could change your baby’s future? That’s exactly what happened in Jack’s family. From grandpa’s sweat-free childhood to baby Jack’s groundbreaking treatment, this story connects generations, science, and heart. You’ll want to read how one family’s bravery is shaping the future of XLHED.