Ten-year-old Maximus Sessions just wants the papillomas on his fingers, toes and knees to go away. They feel bumpy, can be itchy and sometimes they break open and bleed. They are at the top of the list of things he doesn’t like about being affected by Goltz syndrome. Read our new article to learn what papillomas are and how to treat them.
40 Years of Achievement
2021 Annual Impact Report In 1981, a new organization was formed with a simple but incredibly important purpose—to help all those impacted by ectodermal dysplasias. Now, forty years later, the National Foundation for Ectodermal Dysplasias (NFED) is recognized as the global leader on all things ectodermal dysplasia. In 2021, we provided support to nearly 10,000…
Monthly Gifts Are the Life Blood of a Nonprofit
Monthly donations accomplish so much, but not just for the National Foundation for Ectodermal Dysplasias (NFED). Consider the power and impact of a monthly giving commitment—for us, for you, and for the NFED community. Monthly donors provide the NFED with sustainability, a reliable source of monthly support, and a stronger relationship with you. Find out how you can become a Smile Maker today!
Dental Student Enjoys Collaborative and Passionate Spirit of NFED Volunteers
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.
XLHED Clinical Trial Opens in the U.S.
We have great news for XLHED families in the United States. The first site in the U.S. has opened at Washington University in St. Louis for
EDELIFE, the prenatal study for XLHED-affected boys. Learn about the treatment they are studying and how it can potentially impact XLHED symptoms, including the ability to sweat.
Little Girl with Goltz Syndrome is Born A Fighter
Katherine Watts is a two and half year old little girl in Virginia who’s going places. Figuratively and literally. This little lady is in constant motion and is also quite the fighter. Since she was in the womb, she’s had a team of doctors who care for her many complex symptoms caused by Goltz syndrome. Learn about her challenges and what her parents had to learn quickly.
Families Educate 50 Doctors and Students About Their Unique Ectodermal Dysplasias Symptoms
Learning about rare conditions like ectodermal dysplasias in a medical journal article or textbook is certainly valuable for medical professionals. But, getting to meet eight individuals with seven different types of ectodermal dysplasias all in one morning is a unique and extraordinary opportunity! More than 50 dermatology professionals at Saint Louis University got that chance thanks to our families.
Celebrating 40 Years with Our Family
The 2022 NFED Family Conferece was a great success. Every year, the NFED invites the families it serves to convene at the conference to learn and most importantly, to connect. We laughed, we cried, we danced, and we can’t wait to see you next year!