X-Linked hypohidrotic ectodermal dysplasia dogs were administered recombinant ectodysplasin in utero at different times to determine its impact on the development of hair, skin and tooth development. The research team found significant results.
It Felt So Powerful
Beth Tascione and Jonathan Weil didn’t think about it too much when their one-year-old daughter’s tooth came in pointy shape. But when the second one did, too, they got curious. Their online investigation led them on a journey to learn about ectodermal dysplasia, advocate for their daughter and raise funds for the organization that helped them every step of the way, the National Foundation for Ectodermal Dysplasias.
The Tear Is A Permanent Friend
EEC syndrome is a shared experience for several people in Karsen Buck’s family. The teen talks about the challenges she faces and what has her concerned about the future.
You’ll Never Regret Going to Family Conference
An Oregon mom talks about what she saw at her first NFED Family Conference and why that keeps her and her family coming back.
Top 10 Reasons Why Kids Should Advocate
At 13, Aidan Abbott is already getting to be a pro when it comes to advocating for ectodermal dysplasias on Capitol Hill. The Wisconsin teen built his confidence by telling lawmakers about the rare condition that affects him and thousands of others: ectodermal dysplasias. He and his family will be joining the National Foundation for Ectodermal Dysplasias (NFED) on July 18 for Ectodermal Dysplasias Advocacy Day on Capitol Hill. Aidan lists his 10 ten reasons why every kid with ectodermal dysplasias should come advocate with him.
Returning to Capitol Hill
We’re going back! To Capitol Hill for our 2nd Ectodermal Dysplasias Advocacy Day. We invite the ectodermal dysplasias community to join us July 17-18 in Washington D.C. Our goal is to ask Congress to support a bill (to be announced soon) that will provide insurance benefits for dental care of ectodermal dysplasias.
Endless Questions and No Experience
Kerri Fasulo had a long list of questions when her young daughter was diagnosed with a rare condition. She had no experiences to help her find her way through what lay ahead. Soon, she found the resource that made her realize she was not alone.
Show Us Your Super Smile
You can join families around the world in celebrating Ectodermal Dysplasias Awareness Month and Rare Disease Day. Use our easy tools to share your story and advocate for super smiles. Teeth are not cosmetic! Post our flyers. Share your story. Host a Facebook fundraiser. Attend a Rare Disease Advocacy Event.