Early diagnoses. Improved therapies. These are the goals the NFED seeks to achieve by being a relentless catalyst for ectodermal dysplasias research.

It’s an exciting time in research with science and genomics advancing at an incredible rate. To chart a course for research efforts for the next several years, the NFED will host an International Ectodermal Dysplasias Research Conference this fall.

“Translating Discovery to Therapy” will take place October 21-24 in Charlotte, North Carolina. This by invitation only event will bring cutting-edge researchers from multiple disciplines around the world to present their findings and collaborate.

After numerous international consensus conferences, in 2018, the NFED developed a way to classify ectodermal dysplasias based on the genotype, phenotype and affected molecular pathways. That work set the stage for this conference where our goal is to develop early diagnostics and new treatments for the conditions. Specifically, the conference will focus on hair, skin, eye, cranio-facial and dental issues. It is our hope that the findings will help not only ectodermal dysplasias but other related diseases.

We have dedicated members from our Scientific Advisory Council leading this effort. Maranke I. Koster, Ph.D. from East Carolina University and J. Timothy Wright, D.D.S., M.S. from the University of North Carolina have been with the NFED for decades. Each of these researchers brings extensive ectodermal dysplasias experience along with a strong commitment to helping our families.

This conference is going to be an extraordinary opportunity to long-range plan for our research program and inspire scientists to investigate further!

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3 comments on “Charting a Course for Ectodermal Dysplasias Research”

  1. 1
    Jack Kriz on June 23, 2021

    Great news! The serendipity that will occur from the meeting of those with various fields of expertise is bound to lead to effective new solutions for those of us with an ectodermal dysplasia syndrome. Much thanks to the NFED for facilitating this conference! Wish I could be a fly in the room to hear their conversations.

  2. 2
    Marc Steingesser on June 23, 2021

    That is good news. It would be of great value to allow NFED members to attend the conference sessions in real time via Zoom or similar technology (only as spectators if needed), or at least video record the sessions for viewing by members at another time.

    1. 3
      Trisha King on June 25, 2021


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