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.
Hi. My name is Zane. I am 14 years old, and I am affected by Ankyloblepharon-Ectodermal Defects-Cleft Lip and/or Palate (AEC) Syndrome. I like to read, spend time with my friends, and recently built a gaming computer. I enjoy trying different sports and played basketball this past season. I was born at 35 weeks 5…
As we celebrate our 40th anniversary and reflect on the journey to this point, we can say with certainty that no other entity in the world has driven ectodermal dysplasias research more than the National Foundation for Ectodermal Dysplasias (NFED). It’s been our honor to lead. Yet, the gratitude goes to the families who volunteered for studies, the curious researchers who strived to make a difference, and the donors who funded the vision. Let’s look at four decades of advancing research!
The National Foundation for Ectodermal Dysplasias’ fearless leader is celebrating her 20th anniversary as part of the Foundation staff! Today, we celebrate all that Mary Fete, MSN, R.N., CCM, has accomplished and continues to do on behalf of the ectodermal dysplasias community worldwide. Mary officially joined the staff on February 27, 2002. The NFED’s founder,…
Virginia Higgins was just five years old when her mom, Fredia Shimchick, heard about a mom in the area who was looking for other families affected ectodermal dysplasias. Their family would be one of the first 12 families who called NFED their ectodermal dysplasia home. Find out about her love for the NFED family and why she gives back.
Thank you for coming to our site to learn more about ectodermal dysplasias. We know that many health care professionals may see few, if any, patients with ectodermal dysplasia because of the rarity of these syndromes. In addition, ectodermal dysplasia diagnosis and care management can be complicated by the variability of clinical presentation across many…
While there is little published about respiratory problems in ectodermal dysplasias, there is evidence to suggest an increased risk. Learn about the risks, potential causes and recommendations for prevention and treatment.
Are individuals affected by ectodermal dysplasias at increased risk for respiratory problems? Our families often ask this question. In this article, Dr. Timothy J. Fete has the answer. He shares findings from numerous research studies over the years that investigated different types of ectodermal dysplasias and the respiratory issues affected individuals reported. Learn what causes…