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.
Discover a Newer Syndrome: TSPEAR-related Ectodermal Dysplasia
Never heard of TSPEAR-related ectodermal dysplasia? You’re not alone! It’s one of the more rare and newer types. Read this blog to learn more. Two moms share their honest, real-life stories about getting a diagnosis, navigating symptoms like missing teeth and overheating, and finding support.
Complex Wounds in Ectodermal Dysplasias, TP63 Syndromes: November Conference in Philadelphia
We understand that wound healing presents a significant challenge for individuals with TP63 syndromes. This is why we are thrilled to share that the National Foundation for Ectodermal Dysplasias (NFED) will host a wound healing conference in just a few weeks, November 3-5. The collaborative Complex Wounds in Ectodermal Dysplasias Conference will occur at the…
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!
New Breastfeeding Resources for Women with Hypohidrotic Ectodermal Dysplasia
Hypohidrotic ectodermal dysplasia can affect a woman’s breast development. This, too, can impact her ability to breastfeed her child. Download our new resources to share with your doctor, nurses and lactation specialist and educate them. This will help your team prepare for how to help you!
Understanding the WNT10A Gene
In recent years, we have learned that one gene is now the cause for three different types of ectodermal dysplasia. Learn more about the gene called WNT10A and how it manifests.
Breastfeeding Complications in Hypohidrotic Ectodermal Dysplasia
Many mothers desire to breastfeed their baby. But, for women affected by hypohidrotic ectodermal dysplasias, they may not be successful. Findings from a research study explain why the condition can impact your ability to breastfeed. Several women share their own personal experiences.
Top 10 Syndromes that Affect NFED Families
Learn which of the 180+ different 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!