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. Government funding for research and related personnel is crucial in the development of treatments that come at a significant cost to organizations already with limited resources. 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. We are focused on our commitment to research, treatments, and policies that support our community and the broader rare disease family.
If you are looking for ways to take action and support vital research, you can sign the EveryLife Petition, become an advocate, donate, volunteer, and/or share your #RareAndResilient story to amplify our collective voice. We invite you to visit our Ectodermal Dysplasias Awareness Month landing page for resources, tools, and opportunities to participate in your own action and awareness efforts.
For more than 40 years, the NFED has led in education, support, and research for all those affected by ectodermal dysplasias. We remain steadfast in this commitment today and for the future.
Happy #RareDiseaseDay!
