Because of you…
we did more in 2024!
As we look back on 2024, we are filled with gratitude and hope. This year, more families reached out to the NFED than ever before—a 29% increase—and our community now spans 121 countries. Behind every number is a person with a story: children smiling with new confidence after receiving their first set of dentures, a family embraced at our conference after a new diagnosis, and a young adult bravely sharing with lawmakers and researchers as they advocate for critical legislation through the Ensuring Lasting Smiles Act (ELSA).
Thanks to your support, we sustained vital programs while staying true to our highly relational approach to our community. We launched new mental health resources, moved research forward, and supported families navigating a life-changing clinical trial.
“The NFED brings knowledge together with a really supportive and active community…The NFED is an organization that has the infrastructure to support and make all the change in the world for becoming more visible- making sure that we can all get the care that we need and especially the preventative care.” Mindy individual affected by incontinentia pigmenti (IP)
Because of you, families find hope, answers, and connection. Together, we are building a brighter future for everyone affected by ectodermal dysplasias. We couldn’t be more thankful!
We advocated
Families showed up in force to share their stories. Even without a bill for ELSA, your presence made a difference.
We made bold moves
We led a global wound healing conference, added expert advisors, and carved new paths for the Edelife Clinical Trial
We got numbers
A new prevalence study helped us raise awareness and affirm that every person affected deserves dignity, respect, and lasting solutions.
We empowered
From a new school advocacy toolkit to dozens of educational articles and stories, we gave families the resources they needed.
We grew our impact
New staff and a smarter structure helped us serve families better, support research, and sustain essential programs.
Maddie’s Smile Story
“When Maddie entered into sixth grade, she felt super happy with her new, in-progress smile, so much so that in her school picture she shared a very toothy smile – the first ever!…What initially felt overwhelming became more manageable with the invaluable guidance of the NFED and its network of amazing doctors.”
“The NFED empowered Peter to get enough information about his own health to be able to talk with confidence and with a base of knowledge about his own health so that doctors took him seriously and gave him a chance to be part of his own healthcare.” Marianne, Peter’s Mom
In 2024, the NFED welcomed 437 new individuals and 98 families, expanding our community and deepening our impact. We strengthened emotional support services through new surveys and partnerships, including launching Wellness4Rare with the Canadian Ectodermal Dysplasia Syndromes Association (CEDSA) and Global Genes. Our Treatment Assistance Program continued helping families access critical care, we grew our young adult outreach, and offered individuals support through our online groups. Every milestone reflects your generosity and assures nobody has to face a diagnosis of ectodermal dysplasia alone.
Advocacy at the NFED goes beyond policy. It’s about empowering families to speak up in everyday moments. In 2024, 63 families used our School Advocacy Packet to promote inclusion in classrooms. We raised awareness globally, sharing stories that sparked change. At the Stand Together Advocacy Conference, 254 advocates from 35 states united in Washington, D.C. explored how to create impact at school, work, and doctor visits. Advocates have taken a total of 30,987 actions using our advocacy tool to reach out to U.S. members of Congress, and we’ve reached 1,142 registered NFED advocates committed to taking action to pass the bill. We continued championing the ELSA, pushing for insurance coverage for congenital conditions. Together, we’re elevating the realities faced by all individuals affected by ectodermal dysplasias so they have what they need to thrive.
“It feels satisfying to help an important cause…[Volunteering has] made me a better citizen by getting involved and a better father by involving my children to help better their future.” -Jordan, volunteer advocate whose daughters are affected by HED
In 2024, research remained central to the NFED’s mission, driven by the voices and needs of our community. We hosted the Complex Wounds in Ectodermal Dysplasias Conference at Children’s Hospital of Philadelphia, uniting nearly 40 experts to tackle complex wounds in p63 syndromes. We also prepared for the 2025 Incontinentia Pigmenti Conference: Translating Discovery to Therapy to address a major gap in research and care for this often overlooked syndrome. The NFED funded a new mobile app study and laid the foundation for an innovative wound healing research study. Once initiated, families will track wound healing in real time by uploading photos every two weeks. Each initiative brings us closer to answers and treatments.
“Diagnoses like ectodermal dysplasias can feel isolating, but the NFED fosters a strong sense of community for those affected. I feel privileged to play a small role in something of such profound significance.” Rylee, NFED Volunteer and Dermatologist
Among the over 250 NFED advocates at The Stand Together Advocacy Conference in uniting to support ELSA in Washington, D.C., was Alex and Alexa, who were expecting their first child who would be born with a type of ectodermal dysplasia. Seeking answers, they traveled from Hawaii to find community and advocate for change. Their story, like so many others, added urgency to 159 meetings with lawmakers. Together, our advocates shared their challenges and hopes. Every voice mattered. Every story inspired. Together, we’re fighting for ELSA—and for every person’s right to the care they need.
In October, 40 experts from four countries gathered at the NFED’s Complex Wounds in Ectodermal Dysplasias Conference at CHOP to explore solutions for painful skin erosions. Inspired by stories like Ryan’s—born with AEC syndrome and 70% of his skin eroded—researchers discussed paths toward real and innovative therapies. “I was blown away,” said Ruth, Ryan’s mom. “It was a truly special, even overwhelming, experience. It makes you feel like there’s good people in the world!” The conference was co-hosted by Drs. Eric Liao and Maranke Koster and made possible by Bruce and Alice Geismar and Oracle America, Inc.
The Edelife Clinical Trial offers new hope for families affected by x-linked hypohidrotic ectodermal dysplasia (XLHED). For the first time, a treatment given before birth may prevent core symptoms—like the inability to sweat. As of 2024, ten babies had received the therapy, bringing us closer to our goal of 20. Parents like Elizabeth and John, who enrolled in the trial, have experienced the success of this trial firsthand- their son Jack sweats! Thanks to your support, the NFED connects families like theirs, provides vital education, and offers ongoing support as they participate and dream of a better future for all who face a diagnosis of XLHED.
“As a family, we knew early on that we wanted to be part of something bigger—to contribute in a way that made a lasting impact. The NFED accomplishes so much with a small budget, and by giving monthly, we can help sustain their incredible work. It’s our way of showing that we believe in the mission of the NFED, and we want to see it thrive.” –George, a Smile Maker (monthly donor), individual affected by an unknown type of ectodermal dysplasia
Because of you, lives are being enriched. Your kindness and generosity helped individuals and families receive the care, support, and answers they need. Throughout the year, we shared opportunities to give and to make a difference—and you showed up. Every gift—big or small—helped provide vital education, research, treatment, advocacy, and so much more. We are deeply grateful for your trust and belief in our mission. You are part of this story, this impact, and this community. Thank you for standing with us. Together, we’re building a future full of hope and possibility.
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