Marching On After Diagnosis

Jonathan Weil tells the story of how his family grew in strength and knowledge after his daughter, Maddie’s, diagnosis with ecodermal dysplasias. They’ve come a long way from feeling helpless.

A Wild Yet Silent Thunderstorm

Heather Martin struggled to find answers after her son Isaiah did not fully develop teeth from birth. She was told by multiple dentists that his teeth should be capped, but she did not listen. Follow Heather’s journey as she fianlly finds the answers she was looking for in a diagnosis.

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.

Ectodermal Dysplasias Awareness Month 2018

This February, we are asking you, our community, to participate in Ectodermal Dysplasias Awareness Month. Our goal is to create awareness, raise money and advocate for health benefits for dental care of ectodermal dysplasias. Our theme this year is “Advocate for Super Smiles.”

Ectodermal Dysplasia Treatment Videos Now Available

The one thing all our families want is information about ectodermal dysplasia treatment. You want to know what to expect for you or your child. You are seeking treatment options. You are looking for answers. That’s where the National Foundation for Ectodermal Dysplasias comes in. We now have six free videos of educational workshops from our 2017 Family Conference available to watch. You can hear from our experts, see their presentations and learn.

Webinar: Advocating for Ectodermal Dysplasias

Presenters – Becky Abbott and Beth Pond, Chairs, NFED Advocacy Committee This webinar took place on Tuesday, May 16, 2017 and was recorded. Our advocacy goal is to get a federal law passed that would guarantee that insurance companies would be mandated to pay health insurance benefits for necessary medical care and treatment due to…