Learn how this Canadian couple supports their sister who is affected by EEC syndrome and found a whole other family in the process.
Volunteer Spotlight: Nicole and John Cooper
For John and Nicole Cooper, helping out at the National Foundation for Ectodermal Dysplasias is a family affair.
A Cause Worth Fighting For!
Jeanne Wang wanted to give back to the organization that helped her when her son was diagnosed with a rare syndrome called EEC. She quickly found that education and raising awareness empowered her!
The Next Four Family Conference Locations Are…
I am EXCITED to tell you where Family Conference is going to be held for the next four years! One of our goals is always to enable as many people as we can the opportunity to attend at least one of our Family Conferences – and hopefully, more! We do this by keeping registration fees…
Ectodermal Dysplasia Conferences: Getting to Know Other Families Like Yours
The world can be a pretty lonely place if you think that yours is the only family navigating the twists and turns of life with ectodermal dysplasia. But there’s no need to live on an island! There are plenty of ways to start making connections and building a network of love and support, including attending ectodermal dysplasia conferences.
A Legacy of HED: Finding Answers for the Reeder Family
Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.
Must See In Washington D.C.
Washington D.C. is not just our country’s capitol. It is filled with delicious places to eat, cultural events and filled with American history. You can find it all in D.C. Here are just a few of the many places you can visit while you are there during the Stand Together Conference. You can also view…
Family Conference Sponsors Needed
Each year, we hold our Family Conference that provides life-changing experiences for our families at the National Foundation for Ectodermal Dysplasias (NFED). Annually, 300 to 400 people from all over the world and the U.S. get to experience that they are no longer alone. They get to connect with other families and talk to doctors…