The National Foundation for Ectodermal Dysplasias (NFED) has been the driving force behind ectodermal dysplasias research for more than 30 years. Very little was known about the ectodermal dysplasias when we formed in 1981. We knew from the beginning that only research was going to hold the answers to our families’ questions and provide hope for possible cures. We also knew that it was up to the NFED and our families to lead the effort to make it a reality.
Today, we are proud that our efforts have deepened our understanding of the conditions considerably, identified genes and discovered better treatments. Our strategy has been to identify researchers, provide them with access to our families and offer seed grants to get the projects off the ground.
We started by simply gathering family information to better describe the different ectodermal dysplasias. That work continues today. Families’ willingness to participate in research has been paramount in our success. They have completed surveys, provided blood samples, had x-rays taken and more, all in the hope to help not only themselves, but future generations.
We have now funded $2.4 million in ectodermal dysplasias research. We have made enormous strides in the understanding and treatment of the ectodermal dysplasias. But even that is not enough. We will continue to be the catalyst to advance research until all of our families’ questions are answered.
Ectodermal Dysplasias International Registry
The Ectodermal Dysplasias International Registry is our resource for connecting researchers with individuals affected by ectodermal dysplasias. It is an online database that collects and stores the personal information and symptoms experienced by affected individuals. We ask every individual affected by ectodermal dysplasia to complete a profile in the Registry. Together, we can advance research!
Why Joining the Registry Is Important
The Registry helps us better describe the different ectodermal dysplasias which can lead to improved diagnosis. And, when a clinical trial becomes available, the Registry is a crucial way to alert eligible families of the opportunity to participate. Investigators interested in studying the conditions can request access to it to find de-identified information to help them pursue a promising research direction.
When you join, you get access to some of the helpful information that we discover through our Registry. By visiting the Registry and selecting “Charts,” you can view specific information about hypohidrotic ectodermal dysplasia, ankylobelpharon-ectodermal dysplasia-cleft lip and/or palate syndrome (AEC), ectrodactyly-ectodermal dysplasia-clefting syndrome, Goltz syndrome, Clouston and Tooth and Nail syndrome in chart form. For example, 52% of the individuals with AEC who completed a profile in the Registry report that they sweat minimally.
Why Family Participation is Important to Ectodermal Dysplasias Research