The NFED is grateful to have Pilar Magoulas volunteer her expertise as a genetic counselor on our Scientific Advisory Board. Read about why she things more counselors are needed, what the best route to get genetic testing is and why she likes working with the NFED.
The air felt electric on September 19th as 172 advocates marched to the steps of the United States Capitol Building in Washington D.C.., ready to advocate for the Ensuring Lasting Smiles Act (ELSA). Read about this amazing day and what’s happening next for this important legislation.
The NFED is proud to welcome Dr. Patricia Marik to our Scientific Advisory Council. Learn what drew her to the NFED and how she aspires to help families affected by ectodermal dysplasias with their emotional health.
Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she’s made and why she thinks the NFED is different than other organizations.
Let’s work together during Ectodermal Dysplasias Awareness Month to fundraise! We can help you brainstorm and plan an activity or an event. You can also download tool kits we have to make it easy. Are you ready to plan some fun for a good cause?
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.
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.
This month, we shine the Volunteer Spotlight on Amanda Swanson, a fourth-year dental student. Learn how a long-time NFED volunteer’s meaningful relationship with his dental patients inspired her to get involved with the Foundation and help families affected by ectodermal dysplasias.