Over the last two years, the NFED had to adapt to virtual volunteerism and fundraising in response to a global pandemic. See how you can get involved with these efforts.
We salute families in three states for their incredible events benefitting the NFED.
Don’t miss the chance to be a part of the NFED’s largest fundraiser. And it’s all online!
Nikko is a lucky little boy whose family has rallied around him with love and support. Grandpa David and uncle Paul headed off to an NFED Family Conference in search of answers. They found those…and so much more. Find out what they learned and how they are giving back.
With two young sons affected by hyphidrotic ectodermal dysplasia, Anissa Morgan has faced insurance denials, numerous hospitalizations, child care issues and finding doctors to treat them. That’s on top of learning how to care for their varied symptoms. But this determined mother has learned lessons along the way and is teaching her sons that they are well loved. Learn more here.
Find out what the National Foundation for Ectodermal Dysplasias recently published in research, will be announcing about the Ensuring Lasting Smiles Act and is planning for 2019.
In recent years, there has been a growing trend to create a “Gratitude Jar” as a visual reminder of the wonderful things in our lives. Every day (or as often as possible), you put in a note about something that happened that day that gives you gratitude and thanks. At the end of the year,…
Finally getting a diagnosis of hypohidrotic ectodermal dysplasia for their 13-month-old daughter was a relief for Sam and Neil Gansebom. But, they still had all of these emotions. Where would they turn? What should they do? Read about how they are coping and what they are doing.