Liliett Alarcon’s home in Cuba is filled with the joyful sounds of Caribbean music when her son is playing his drum set. But the Caribbean weather—very hot and very humid—can be tough at times for Manuel since he doesn’t sweat. Learn how Manuel is coping and how his mom. doctors and community support him.
Committed Advocates Inspire Action in the Senate
With about six weeks left in the 117th session of Congress, the mood on Capitol Hill feels hopeful and positive for getting the Ensuring Lasting Smiles Act (ELSA) passed! Team ELSA participated in our third virtual Advocacy Day this year. Find out where things stand on the bill and how you can help.
Why I Volunteer
Find out what happened to Jack Kriz when he was 50 years old that finally made him feel whole, and why he always says yes when the NFED asaks for his help.
New Guide to Help With Your HED Baby’s First Year
We’re excited to share with our community a new guide to help families navigate the first year of life for their baby affected by hypohidrotic ectodermal dysplasia (HED). It’s a wonderful resource whether HED runs in your family or you’re brand new to the disorder.
Raising a Strong Daughter with HED
Leah Steenson was worried and scared when her daughter was diagnosed with ectodermal dysplasia but that all changed when she found the NFED. Find out how she’s teaching her happy kindergartener to speak up for herself and explain her condition.
What I Want for My Grandchildren With Ectodermal Dysplasias
Sandi Hirst is a grandma who is passionately advocating for the three generations in her family who are affected by x-linked hypohidrotic ectodermal dysplasia. She doesn’t want her daughters to have to pay six figures for her grandsons’ dental care. Read this month’s Volunteer Spotlight to find out what she’s doing to help advance the Ensuring Lasting Smiles Act and why.
To Know Katherine is To Know Joy
Jodi Watts’ days as a stay-at-home mom with a baby with Goltz syndrome were filled with appointments to attend to Katherine’s many needs. The fiesty little toddler faces many challenges but continues to thrive. Find out what her parents have learned, the life-changing conference they attended, and the dreams they have for Katherine.
Learning More About Papillomas and Goltz Syndrome
Ten-year-old Maximus Sessions just wants the papillomas on his fingers, toes and knees to go away. They feel bumpy, can be itchy and sometimes they break open and bleed. They are at the top of the list of things he doesn’t like about being affected by Goltz syndrome. Read our new article to learn what papillomas are and how to treat them.