National Foundation for Ectodermal Dysplasias

?? Become an NFED Advocacy State Lead! ?? As the 119th Congress begins, we’re strengthening our Advocacy State Lead program—and we need passionate volunteers from every U.S. state! We’re looking for individuals who: ? Are affected by ectodermal dysplasias or other congenital anomalies (or have a family connection) ? Or have participated in NFED advocacy efforts or supported the Ensuring Lasting Smiles Act (ELSA) This is your opportunity to amplify your voice, drive change, and support critical legislation. Join our Zoom webinar on March 18th at 7 PM CT / 8 PM ET to learn more about this impactful role. ?? Register now: https://lnkd.in/eRjdPyp6 #NFEDAdvocacy #EnsuringLastingSmiles

???? Conference Advances Research and Treatment for Incontinentia Pigmenti Our Executive Director, Mary Fete, shares insights from the NFED’s Incontinentia Pigmenti Conference: Translating Discovery to Therapy in Charlotte, NC. The conference brought together top researchers, clinicians, and families both in-person and around the world virtually to push the boundaries of IP research, diagnostics, and treatment development. From genetics and inheritance patterns to vision-related challenges, this event emphasized the power of collaboration in rare disease research. ?? Learn how this conference is shaping the future of IP treatment: https://lnkd.in/etvYiESF #RareDiseaseResearch #IncontinentiaPigmenti #NFED

Our Executive Director, Mary Fete, proudly represented the NFED community at EveryLife Foundation for Rare Diseases' Rare Disease Week in Washington, D.C. ?? She joined advocates from across the country to champion policies that support research, improve treatment access, and enhance care for those affected by ectodermal dysplasias and other rare diseases. ?? Your voice matters, too! Help us push for critical research and policy changes by joining the advocacy efforts today. Take action now: ?? https://lnkd.in/eJgQQtyT #RareDiseaseWeek #AdvocateForRare #EctodermalDysplasias

Will you support our work by making a one-time or recurring donation to the NFED? As we wrap up awareness month, we invite you to make a difference on #RareDiseaseDay. Your donation to the NFED helps us empower, support, and connect individuals and families affected by ectodermal dysplasias. ?? Every gift brings us closer to a future with more resources, research, and hope. ?? Donate today: https://nfed.org/donate/ #RareAndResilient #NFED

A Rare Disease Day Statement from the NFED ?? On this last day of February, the rarest of days on the calendar, we celebrate International #RareDiseaseDay. It is also a good time to share that our mission at the NFED remains unwavering: to support individuals affected by ectodermal dysplasias through education, support, and research. We are deeply committed to the advocacy required to ensure all people impacted by the over 50 syndromes of ectodermal dysplasias receive the treatments they need to thrive and attain the quality of life they deserve. The NFED also acknowledges that we cannot do this work alone. Today, we share in the growing concern over recent federal actions that jeopardize the funding of critical research and threaten and/or eliminate the jobs of NIH researchers—some of our most trusted partners, colleagues, and friends. These decisions have direct implications for real people already facing immense challenges, from access to treatment to mounting medical costs. While we navigate all of these changes, our resolve is stronger than ever. We remain #RareAndResilient. Read our full statement here: https://lnkd.in/eAemrj64

?? A Heartfelt Thank You to Mary Fete! ?? This week, we celebrate 23 incredible years of leadership, dedication, and compassion from our executive director, Mary Fete! ?? Mary has tirelessly served families affected by ectodermal dysplasias around the world, making an immeasurable impact on our community. With a grateful heart, she has announced her retirement, effective December 31, 2025. While it’s hard to imagine the NFED without her, our Board of Directors is actively planning for the future and remains confident in the Foundation’s continued success. Please join us in thanking Mary for her extraordinary leadership! Let’s make 2025 her best year yet! ???? #NFED #Gratitude

It's almost the end of #EctodermalDysplasiasAwarenessMonth!?? ?? Did you know that families affected by ectodermal dysplasia often face denials from their insurance for necessary medical care and treatment benefits? That's why the NFED is advocating that Congress ??? ?? pass the Ensuring Lasting Smiles Act (ELSA). The NFED is not the only organization working on ELSA—In fact, there are more than 70! Check the first link in the comment to learn more and raise your voice so that all those affected by birth anomalies get the treatment they need. ?? #RareandResilient

??Funding for Research Is Vital to the Mission of the NFED ?? We recently featured Dr. Maddie Salois, who successfully defended her PhD and has been a key contributor to NFED research alongside Dr. Maranke Koster. Researchers like Maddie are essential to advancing treatments for ectodermal dysplasias, improving care and quality of life for those affected. However, current federal actions threaten funding sources that support NIH researchers like Dr. Salois. Without this critical funding, the treatments our community depends on are not possible. Let’s celebrate Dr. Salois’ achievement and #RareDiseaseWeek while also raising awareness of the urgent need to protect rare disease research funding. ?? If you want to speak out about how research funding and personnel cuts impact the rare disease community, use our advocacy tool to easily find your legislators. ??? ?? Take action here: https://lnkd.in/e-_h4zru #EctodermalDysplasiasAwareness #FundRareDiseaseResearch #StrongerTogether #RareDiseases

?? Volunteer Spotlight: Dr. Beau Meyer ?? Meet Beau Meyer, DDS, MPH — a dedicated advocate for improving dental care access for children, especially those affected by ectodermal dysplasias. As a valued member of the NFED’s Scientific Advisory Council (SAC) since 2018 and the Patient Care Council since 2022, Dr. Meyer is passionate about improving the oral health trajectory of children, such as those who have difficulty accessing dental care. Read more about his incredible work at https://loom.ly/2LWg5J0 #NFED #EctodermalDysplasias

Just a few days left of #EctodermalDysplasiasAwarenessMonth! There's still more facts to share! ?? ?? Did you know that families affected by ectodermal dysplasia often face insurance barriers to dental care? Check the first link in the comments to learn more about how to navigate health insurance claims for dental-related costs—we can help! #RareandResilient