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.
In all her years as a PICU nurse, Amy Leverenz had never heard of ectodermal dysplasia until the day her daughter was diagnosed with the rare condition. She found the National Foundation for Ectodermal Dysplasias, educated her self and is now educating physicians and legislators. She’s on a mission to impact the lives of other families like hers for the better.
Learn how this Canadian couple supports their sister who is affected by EEC syndrome and found a whole other family in the process.
For John and Nicole Cooper, helping out at the National Foundation for Ectodermal Dysplasias is a family affair.
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!
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…
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.
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.