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!
Diagnosing Ectodermal Dysplasia Syndromes in Babies
When it comes to understanding and diagnosing ectodermal dysplasia syndromes in children, parents play a crucial role. These genetic disorders affect 1 in 10,000 births. Some symptoms can be identified during pregnancy or at birth (especially if there is a family history), many only become noticeable during later stages of growth and development, like when…
What Does HED Look Like?
Hypohidrotic Ectodermal Dysplasia (HED)
Other Names: Anhidrotic ectodermal dysplasia, Christ-Siemens-Touraine syndrome
Rapp Hodgkin and Hay Wells: The Same Disorder?
Yes! Rapp Hodgkin syndrome (RHS) and Hay Wells syndrome (HWS) were initially named after the physicians who first described the disorders in the literature in 1968 and 1976, respectively. Both pairs of physicians described an ectodermal dysplasia characterized by hair, nail, limb, and tooth abnormalities, as well by facial clefts. The only difference between the…