Together,
we create a brighter future.
Together.
That word has defined the National Foundation for Ectodermal Dysplaisas (NFED) since its founding. As we reflect on 2025, it’s the one that best captures what we accomplished this past year.
In 2025, we made sure no one faced a
new diagnosis alone. Our community of
affected individuals grew to more than
11,000 members, each connected to people
who truly understand their journey. This
past summer in Minneapolis, nearly 300
attendees came together for our Family
Conference, including 126 brand new
attendees. Watching children who look like
one another meet for the first time, finally
free to just be themselves, is something that
simply defies description.
Together, we offered treatment support in meaningful ways. Families received their child’s first set of dentures, wigs that restored confidence, and genetic testing that answered years of questions. We developed new resources on bullying, mental health, and talking with your child about their diagnosis. And through our partnership with Smile Bridge by The Aspen Group, 16 families gained access to free dental care. Our growing library, knowledgeable staff, insurance navigation toolkits, and 25 dental treatment centers continue to connect families with the answers they need.
In research, we hosted an Incontinentia Pigmenti Conference in Charlotte, N.C. to explore new eye care guidelines and recommended providers. We awarded $50,000 in seed grants for breakthrough discoveries, and made significant progress toward launching the Ectodermal Dysplasias Registry later in 2026. The Edelife Clinical Trial also continues to enroll participants exploring prenatal treatment for XLHED.
Our advocacy efforts extended from school hallways to Capitol Hill. The School Advocacy Toolkit helped families work together with educators to make learning environments more accessible, while our community walked the halls of Congress together pushing for the Ensuring Lasting Smiles Act (ELSA). There is nothing quite like watching a five-year-old tell their Senator or Representatives why they need teeth, as their parents echo the urgency to mandate insurance coverage for the people who need it most.
This year also brought meaningful growth within our own team. We welcomed three new staff members, expanded our Scientific Advisory Council, Patient Care Council, and Board of Directors, and celebrated 24 years of faithful leadership from Mary Fete as she retired and passed the torch for the next chapter at the NFED.
None of this happens without you. Thank you for walking alongside us.
“They say there’s a small number of us out there in the world, but you’re not the only one with ectodermal dysplasia- you’re not alone.” – Cameron, affected by Goltz syndrome
“The NFED makes great use of its funds and the staff are excellent and really help. Your donation helps support the staff and the mission of the organization.”
–Elizabeth, a mother to child affected by XLHED
Behind every hour volunteered and every dollar raised is someone who understands what it means to feel seen. NFED volunteers don’t just fill roles, they build belonging. From grassroots fundraisers to hands-on community work, their dedication reflects a deep belief in this mission and in each other. To every volunteer, fundraiser, and supporter: you are the NFED. What you give, your time, your heart, your hustle, shapes a future where every person in our community feels understood and valued.
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