Jorgelina, a mother in Argentina, was shocked and sad when one of her twin sons was diagnosed with ectodermal dysplasia. As an English teacher, she decided to learn everything she could. But, it was her son, Jeronimo, who became her best teacher and changed her attitude.
Karl Nelsen has spent his lifetime fighting for insurance benefits to get teeth. Now, he’s fighting for legislation to end insurance denials. He’s doing this for himself, his daughter, and for person affected by ectodermal dysplasia for generations to come.
Tick, tick, tick. Find out why it’s critical that we get at least 75 lawmakers to co-sponsor the Ensuring Lasting Smiles Act by July. Learn the truth about why every family with ectodermal dysplasia in the United States must take action today.
Research the National Foundation for Ectodermal Dysplasias has nurtured for three decades is advancing to a clinical trial. EspeRare has partnered with Dermelix Biotherapeutics to develop DMX-101 as an in-utero protein replacement therapy for the treatment of x-linked hypohidrotic ectodermal dysplasia (XLHED). If approved, the treatment has the potential to be the very first in utero administered drug to correct a genetic condition before birth!
The Abbott family spent several years trying to figure out why their young son, Aidan, was missing teeth and had recurring high fevers. Finally, they received an answer. Their son was affected by ectodermal dysplasia. Professionals assured them that insurance would cover the lifetime of dental care he would need to restore his teeth. Unfortunately, that wasn’t the case. Denial after denial catapulted the Abbotts on a journey to fight for insurance benefits not only for their son, but all families affected by congenital anomalies. They found an ally in Congress who co-sponsored the Ensuring Lasting Smiles Act.
Watching your baby girl – who is only 5 – get fitted for her first pair of dentures can be an emotional journey. Read how Sarah Hamilton is navigating the process and find out what she’s learned about her daughter, herself and ectodermal dysplasia.
The Abbott family’s journey to new teeth for their son, Aidan, has not been an easy one. They have had to fight their insurance company every step of the way for years. Find out why his mom thinks it worth it and why every family must fight, too!
When Mason Langefeld still had not developed any teeth by his one-year-old check-up, his mom, Renee, decided to call a local dentist. He asked her a few questions that finally pointed them toward answers and a resource to help them care for their son. Read how they successfully fought their insurance company to pay for their son’s dentures.