The National Foundation for Ectodermal Dysplasias (NFED) has been celebrating Ectodermal Dysplasias Awareness Month throughout February and Rising Up for Rare! But today, 2-20-2020, we join with the ectodermal dysplasias support groups in other countries to celebrate the first International Ectodermal Dysplasias Awareness Day.

We are very proud of our international partners and collaborations! Let me share with you how our U.S.-based organization reaches around the globe to make life better for the ectodermal dysplasias community.

The NFED serves families in more than 80 countries. We are thrilled to welcome everyone to our NFED family! Our mission is to provide help and support no matter where someone lives.

Collaborations are Key

We have long recognized that we need to collaborate with researchers and other international groups to be successful.

The NFED has sponsored five international research conferences and we are planning another for 2021. These conferences have included participants from across the world.

Bringing together some of the brightest minds has helped us more clearly characterize, classify and understand ectodermal dysplasias. The conferences have also helped us to develop treatment and diagnostic guidelines for several syndromes. This has made a tremendous research impact.

We have also funded researchers from many different countries for several decades. Their contributions have increased our understanding of these heritable disorders and identify genetic markers.

In 2010, the NFED established the first and only Ectodermal Dysplasias International Registry. Our hope is that every affected individual in the world will join the Registry. It enables us to connect families with clinical trials and better understand what symptoms they have.

All of these efforts have one goal: to work together to find treatments and cures.

Support Groups in 26 Countries

We also belong to the Ectodermal Dysplasia International Network (EDIN). which was established in 2007. EDIN is an umbrella organization for the ectodermal dysplasias groups from 26 countries across the world.

Pictured are representatives from groups in Finland, France, Germany/Austria, Italy, Mexico, Russia, Spain and the United Kingdom. I’m standing second from left.

The leaders from each group share ideas, best practices and collaborate on projects. We meet every other year and more often by Skype. We are working together for the ectodermal dysplasias community!

Some members of EDIN developed this awareness ribbon which they are using today.

Let’s Celebrate!

Please join me in celebrating our first International Ectodermal Dysplasias Awareness Day. Together with our sister organizations as we shout out for ectodermal dysplasias!

Join our NFED family in solidarity by wearing blue today to celebrate! Post a picture on Facebook and be sure to tag us.

Here are some other ways you can celebrate today, too.

Celebrate International Ectodermal Dysplasias Awareness Day

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