NFED mom and advocate, Samantha Mueller, has passionately advocated for the Ensuring Lasting Smiles Act since its beginning. She encourages families to take action using her easy tips!
Getting your health insurance to pay for your dental care can be tough. We can help! Use our expanded insurance resources to map out your journey to success!
Elizabeth Hoverman faced treatment failures and a pandemic delay to get her beautiful smile. The artist shares her exhausting six-year journey and why she can’t stop smiling.
It’s extraordinary what our advocates and staff have accomplished in just two months since the Ensuring Lasting Smiles Act (ELSA) (S.754/H.R.1916) was re-introduced in the 117th Congress! Our brave advocates shared their struggles on our Virtual Advocacy Day on Capitol Hill. Find out what’s happened with ELSA since they shared their stories.
Life has been full of surprises for the Sanmiguel Bejarano family. They are teaching their daughters how to rally in the face of the unexpected. Alicia and Luna share what they want others to understand about their rare condition. They are becoming the Voices of the Future for ectodermal dysplasias.
It’s Volunteer Appreciation Week! We celebrate the incredible people who stepped up during a pandemic and helped us advance our mission. Learn what that looked like, what we are planning next, and how you can add your voice!
Are you ready to learn more about ectodermal dysplasias from our experts? Check out these affordable webinars you can attend right from the comfort of your couch. Plus, the meeting format lets you connect with other families.
They dissed him. Called him names. Made fun of his appearance. Their voices rang in his ears every day. Voices filled with ridicule and hate. And for what reason? Simply because he was affected by a rare disorder. One day, Cyprian Katongo chose to listen to different voices. His life of suffering took a new direction….one he defines as H.E.D.