We’ve got something exciting to share—our mission at the National Foundation for Ectodermal Dysplasias (NFED) has gotten a refresh! After thoughtful conversations with our Board of Directors, Scientific Advisory Council, staff, families, and community partners, we’re proud to unveil our updated mission statement:
Together, we enrich the lives of people affected by ectodermal dysplasias by fostering community, providing education and support, and driving advocacy and groundbreaking research—creating a brighter future for all.
This isn’t just a new sentence to memorize—it’s a reflection of who we are, what we do, and why we do it. It’s the heartbeat of the NFED, and I want to walk you through what it means and why it matters.
Why Now?
Mission statements aren’t meant to be written once and forgotten. They’re living, breathing reflections of the work we’re doing and the people we serve. As our ectodermal dysplasias community grows and evolves, so, too, must our mission.
We wanted to be sure our mission statement truly captured the full scope of the NFED today, not just where we’ve been, but where we’re going. Over the years, we’ve expanded our efforts in advocacy, developed more robust educational resources, fostered deeper relationships within our community, and supported research that’s transforming the future. Our updated mission reflects all of that—and more.
And here’s the best part: this wasn’t written in a boardroom by one person. It was created together, through conversations with key constituents.
This is our mission.
What’s New?
While the heart of what we do hasn’t changed, our new mission includes five clear pillars that better capture the depth and breadth of our work:
1. Fostering Community
At the NFED, people come first. Always. Whether it’s connecting at Family Conference, sharing stories in a Facebook group, or cheering each other on in a clinical trial, community is the center of everything we do. Bringing individuals affected by ectodermal dysplasias and their loved ones together is perhaps what we do best. We know this journey is easier when you don’t have to walk it alone.
2. Providing Education
Knowledge is power. And, we’re here to make sure you have it. With 50+ types of ectodermal dysplasias and a long list of symptoms, it’s imperative we continue to share the latest information. From our extensive online library to webinars and in-person learning opportunities, we’re committed to giving families, care providers, and researchers the tools they need to navigate the world of ectodermal dysplasias with confidence.
3. Providing Support
Sometimes you just need someone to listen or someone who’s been there. Our staff, volunteers and community members offer care and understanding, whether it’s over the phone, through an email or with a hug at the Family Conference. That mutual support is the heart of NFED. Plus, the NFED offers extensive programs to meet families’ many needs—from navigating insurance and accessing treatment assistance to finding knowledgeable care providers who understand ectodermal dysplasias.
4. Driving Advocacy
From pushing for legislative wins in the United States like the Ensuring Lasting Smiles Act to raising awareness in schools and doctor’s offices, we advocate with and for our families. Advocacy isn’t just about laws—it’s about helping the world better understand and support individuals living with ectodermal dysplasias. The NFED empowers individuals to be their own best advocate through training and resources. Raising awareness is the critical first step for all of us to take.
5. Driving Groundbreaking Research
Research has the power to change lives. The NFED has pioneered cutting edge ectodermal dysplasias research for over 40 years, and we’re not slowing down. From the first in-utero therapy of its kind for x-linked hypohidrotic ectodermal dysplasia to treatment protocols for incontinentia pigmenti and p63 syndromes, we’re committed to finding answers, easing burdens, and offering hope. It’s imperative that the NFED continues to lead this research, otherwise, who will?
So, What’s the Bottom Line?
Our updated mission doesn’t change who we are. It strengthens it. It brings clarity to our purpose, celebrates the diversity of our ectodermal dysplasias community, and creates new opportunities for connection, education, healing, and progress.
This mission helps us explain what the NFED is all about in a way that’s simple, clear, and shareable. Next time someone asks, “What does the NFED do?” you can say the short form of the mission statement:
Together, we enrich the lives of people affected by ectodermal dysplasias, creating a brighter future for all those impacted.
Let’s keep building that brighter future—together!