Dr. Angus Clark is investigating a new, noninvasive way to diagnose x-linked hypohidrotic ectodermal dysplasia in utero. His findings could help facilitate the upcoming clinical trial for treatment. We are proud to fund this work.
Meet Your Legislators Close to Home
Beth Pond has been advocating for ectodermal dysplasias health benefits for 23 years. She shares what you can do in your home state to create change.
Advocacy from the Classroom to Capitol Hill
Aidan Abbott tells us about his journey as an advocate for himself and the Ensuring Lasting Smiles Act.
My $35,000 (So Far) Smile
Cody Snell has paid $35,000 out of pocket – so far – to replace teeth he never had due to ectodermal dysplasia. At 33, he knows that amount will climb since he faces a lifetime of dental care costs. That is, unless the Ensuring Lasting Smiles Act is passed. He is advocating for this legislation to assure that he, his affected daughter and all families with his condition get the insurance coverage they need for their medically necessary care.
Breastfeeding Complications in Hypohidrotic Ectodermal Dysplasia
Many mothers desire to breastfeed their baby. But, for women affected by hypohidrotic ectodermal dysplasias, they may not be successful. Findings from a research study explain why the condition can impact your ability to breastfeed. Several women share their own personal experiences.
Our Baby Struggled to Swallow
Baby Oakley had a hard time feeding. Watching your baby not be able to swallow can be terrifying. He had projectile vomiting and wasn’t gaining weight. His parents begged doctors to help their baby boy. A hospital stay and many tests later, they figured it out. This information coupled with a trip to the dentist led to a diagnosis of ectodermal dysplasias. Find out how Oakley is feeding now.
Becky Abbott Joins NFED Staff
Meet the newest member of the National Foundation for Ectodermal Dysplasias staff. Becky Abbott will help us serve families affected be ectodermal dysplasias by managing the treatment and research programs. Learn why our mission is personal for this rare disease advocate.
Hazel Glows With Her New Teeth
Your five-year-old daughter wearing her first dentures can be surreal. Just ask Sarah Hamilton. The mom shares about how the teeth have impacted Hazel’s eating and speech and how they are having to battle their insurance to get benefits.