Ectodermal Dysplasias Awareness Day
Pictured are representatives from the groups in Finland, France, Germany/Austria, Italy, Mexico, Russia, Spain and the United Kingdom. (I’m standing second from left!)

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!

While the weather was cold and a bit dreary, spirits were high as we shared information and ideas.

2 comments on “Collaborating With Leaders Around the World”

  1. 1
    أم الجلند on January 1, 2020

    I have a boy with ectodermal dysplasia

    1. 2
      Jodi Edgar Reinhardt on January 2, 2020

      You came to the right website! Our site is full of information for how you can care for your son. We hope that you find it useful! ~ Jodi, NFED, Director, Marketing and Communications

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