In early October, I met with leaders from eight other ectodermal dysplasias support groups/organizations. The Ectodermal Dysplasia International Network meeting took place in Germany to discuss how the groups can work together to help families.
Also, Prof. Holm Schneider shared the latest research news for x-linked hypohidrotic ectodermal dysplasia studies. We’ll be sharing that information soon!
The groups will celebrate an International Ectodermal Dysplasias Awareness Day on February 20, 2020. This will be a part of our month-long celebration of Ectodermal Dysplasias Awareness Month. We’ll share more details as plans develop. We definitely want you to participate!
No matter if the groups are large or small, all are working to make things better for families affected by ectodermal dysplasias!