Have you ever wished you could talk to someone who truly understands life with ectodermal dysplasia? NFED Family Liaisons are volunteers who have been there. Read about seven ways these caring adults and parents can offer support, practical advice and friendship, so no family has to walk this journey alone.
Building a Bridge Between Pediatric Dermatology Researchers and Families
Our Executive Director and Director of Research just returned from the Pediatric Dermatology Research Alliance (PeDRA) conference news. They met kind doctors, inspired young researchers, and secured a spot on a medical podcast. Learn why your family’s story matters, and how we’re building research partnerships that move us closer to treatments and cures.
We’re Hiring, Development Coordinator!
Are you passionate about nonprofit development and looking to make a meaningful impact? The National Foundation for Ectodermal Dysplasias (NFED) is excited to announce a full-time, remote opening for a Development Coordinator! This is a dynamic role where you’ll support our Director of Development and Communications in executing strategic plans that drive our mission forward….
Welcome Dr. Stephen Kaminsky to the NFED Scientific Advisory Council
The National Foundation for Ectodermal Dysplasias (NFED) is proud to welcome Stephen Kaminsky, Ph.D. to our Scientific Advisory Council (SAC). The SAC is a team of experts who help guide our research program that could lead to better treatments for ectodermal dysplasias. A Leader in Gene Therapy Dr. Kaminsky is a Professor of Research in…
Planned Giving for Ectodermal Dysplasias: How Any Gift Can Become a Legacy
Someone welcomed you to the NFED, and you stopped feeling so alone. Planned giving lets you offer that same welcome to families decades from now. You don’t need a large estate. Learn how a bequest or other gift of any size can build a lasting legacy for families like yours.
A Little Boy, a Denture, and a Big Ask in Washington
A four-year-old boy affected by ectodermal dysplasia colored quietly while his parents set his denture on a Senate staffer’s table. Their story shows why the Ensuring Lasting Smiles Act matters. Read how NFED advocates are gaining support in Congress, why momentum is growing, and the simple steps you can take to help.
Wound Healing Conference: When Families, Doctors, and Researchers Team Up for Answers
Meet Lily, a brave seven-year-old who made new friends, colored a stuffed bear, and helped researchers at the NFED’s Wound Healing Conference. Find out how families like hers shaped new treatment guidelines, started a skin sample biobank, and showed what it looks like when science and community join hands.
We’re Hiring: Director of Communications!
Be the One Who Tells Our Stories! Are you a creative communicator with a heart for making a real difference? Do you believe that great storytelling can educate, connect, and inspire a global community? The National Foundation for Ectodermal Dysplasias is looking for a Director of Communications to lead how we share our mission with…