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.
Meet Nicole, a determined 14-year-old girl who is using her voice on Capitol Hill to advocate for herself and others. She would like you to join her. Learn why she’s advocating and what you can do to help.
More than forty years ago, a group of people came together with a shared goal: to help those with ectodermal dysplasias. Today, the National Foundation for Ectodermal Dysplasias (NFED) is a global leader in supporting and advocating for those affected by ectodermal dysplasias. In 2022, the NFED provided support to nearly 10,000 affected individuals worldwide.
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.
Soren Roe used to hide the fact that he’s missing teeth. Now, he uses it as an opening line when he meets new people. Read how this 24-year-old has faced his fears and realized how ectodermal dysplasia has shaped his life.
Are you a part of the largest organization for families affected by ectodermal dysplasias? Some of our members weighed in on what they have found to be the biggest benefit of joining the National Foundation for Ectodermal Dysplasias. Find out why the NFED is where you belong!
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.