Research into the Ectodermal Dysplasias has been carried out since the 1800s when Darwin first documented his findings. However, very little was known about Ectodermal Dysplasia when we formed in 1996, the same year that an international team of Researchers, one of whom, Professor Angus Clarke, is the Chairman of the ED Society’s Medical Advisory Board, identified the first gene responsible for the X-Linked Hypohidrotic Ectodermal Dysplasia. Since that time research has continued around the world and more Ectodermal Dysplasia genes have been found.
A greater understanding of the identified genes and better treatments have enabled us to help our families lead a near normal lifestyle.
We continue to support research which is currently focusing on treatment to correct some of the symptoms in X-Linked Hypohidrotic Ectodermal Dysplasia neonatal boys.
You can also find updates on the latest research and stories in our articles library.
ECTODERMAL DYSPLASIAS INTERNATIONAL REGISTRY
The Ectodermal Dysplasias International Registry is a resource for connecting researchers with individuals affected by the 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. Researchers interested in studying the conditions can request access to the Registry to find anonymous 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.
A recent study has explored women’s experiences of medical tattooing:
Centre for Appearance Research (CAR) partnered with Alopecia UK, Rae Denman and the ED Society UK to explore the risks & benefits of medical tattooing from the perspective of women with hair loss and alopecia. You can read more about the findings here:
Putting your face in someone else’s hands – February 2021