Ever wonder what it’s like for boys born with Goltz syndrome? This blog shares their rare and inspiring stories! Learn why they’re so unique, how the condition affects them, and how the NFED’s new resource helps parents through that important first year.
Meet Three Babies Affected by Goltz Syndrome
Meet Eliza, Finley and Emmeline and learn about their first year of life. Each are affected by Goltz syndrome but in different ways. Their stories will help parents expecting or who have a newborn with this condition navigate the unknowns of this complex syndrome. Plus, download NFED’s comprehensive new resource: A Guide to the First Year of Life: Goltz Syndrome / Focal Dermal Hypoplasia.
What to Expect if Your Newborn is Affected by Goltz Syndrome
If your baby is affected by Goltz syndrome, you’re not alone. Our new guide shares what to expect in the first year, practical tips for care, and stories from families who’ve been there. The NFED is here to support, comfort, and connect you every step of the way.
Dermatology Grand Rounds Highlight Power of Patient Stories
Curious how NFED families are helping doctors truly understand ectodermal dysplasias? Check out how twelve individuals stepped up to teach med students and doctors about ectodermal dysplasias at a recent Dermatology Grand Rounds. Their personal experiences provided a powerful way for the health care professionals to learn about these rare conditions so they can better diagnose and treat them.
Prevalence Rates: How Many People are Affected by Ectodermal Dysplasias?
People often ask, “How many individuals are affected by ectodermal dysplasias?” It’s a challenging question to answer, since they are rare conditions. A team of NFED researchers now has an answer. Read to learn just how prevalent ectodermal dysplasias are and why these numbers are important.
Top 10 Syndromes that Affect NFED Families
Learn which types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!
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.