The Power of a Mother’s Love

The Nelson family was committed to getting their unborn son a potentially life-changing treatment for his XLHED. But, that meant traveling across the world-twice-in the middle of a pandemic! Learn more about their incredible adventure and how their son is doing.

A Wig Sister is Living Her Best Hair Life

Jessica Reece has always had super thin, fragile and unmanageable hair due to EEC syndrome. Find out how trying a wig has changed her life. Plus, learn Jessica’s best tips for purchasing, choosing, caring for and styling a wig.

Volunteers Needed for Dermatology Research Survey

Dermatologist Dr. Amy Paller is researching transition readiness in adolescents with genetic chronic skin disorders, such as ectodermal dysplasia. Learn more about how you or your adolescent can participate.

A Year for the Books

2020 was filled with unprecedented global, health, economic and social challenges. That makes it doubly important that we all pause and look back on some of the great things that we’ve accomplished…with you at our side.

Dental Treatment Centers Added in New York and Georgia

We are excited to share that we have added three new Dental Treatment Centers! Families affected by ectodermal dysplasias now have 22 different centers across the United States to consider for their oral health care. One of these centers is offering free dentures for children under 8.

Charting a Course for Ectodermal Dysplasias Research

It’s an exciting time in research with science and genomics advancing at an incredible rate. To chart a course for research efforts for the next several years, the NFED will host an International Ectodermal Dysplasias Research Conference this fall.

AEC Syndrome: What to Know If Your Baby is Affected

If your baby has been diagnosed with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or if you suspect he or she might be affected, you have come to the right place! Here are some key things to know and resources to help you care for your baby.