When a genetic condition is diagnosed in an individual or is known to run in the family, there are often questions about implications for passing the condition on to future offspring. Questions can arise about whether any options exist to predict the likelihood that a future child would be affected by the condition, or even whether options exist to decrease or avoid the risk of future child having the condition. Learn about these options.
ELSA Introduced in Congress
The Ensuring Lasting Smiles Act (ELSA) was introduced as a bill in the U.S Senate and House today. This legislation will significantly impact families affected by ectodermal dysplasias and other congenital anomalies. If passed, it will provide health benefits for their complex dental care.
Teen Coder Inspired to Volunteer
A teenager finds the National Foundation for Ectodermal Dysplasias (NFED) online and offers his talents to raise awareness. An expert coder, this bright young man learns the impact one person can have.
How to Advocate for Your Child With Ectodermal Dysplasia at School
If your child is affected by ectodermal dysplasia, your to-do list to school ready for likely has more on it than buying supplies! We pulled together some resources to help you advocate for your child at school.
Update on the XLHED Natural History Study
The NFED granted funding to Dr. Holm Schneider to help him finish the XLHED Natural History Study. Learn why this data is critical for the prenatal trial.
One More
A teenager with ectodermal dysplasias talks about what drives him to go “one more.” Learn what he’s surprised to say about the disorder that affects him.
Advocating for ELSA on Capitol Hill
Families from across the U.S. met with members of Congress on July 18 for the 2nd National Foundation for Ectodermal Dysplasias Advocacy Day on Capitol Hill. They educated about ectodermal dysplasias and the need for the Ensuring Lasting Smiles Act (ELSA).
A Whirlwind
Volunteers helped us run every aspect of the 2018 National Foundation for Ectodermal Dysplasias Family Conference in Portland, Ore.