The month of April is National Volunteer Month. In light of that, we have been reflecting on our incredible community of volunteers. Every time we consider our volunteers and the role they play, we reach the same conclusion:  the NFED truly couldn’t do the work we do without you. You are very important to our mission of empowering and connecting people touched by ectodermal dysplasias through education, support and research. Thank you!

We greatly appreciate your willingness to give of your time, your talents and service. You play an integral part in creating awareness; raising funds; participating in research; reaching out to legislators and donors; assisting with strategic planning; offering professional expertise; and liking, sharing, loving, and reading our posts, tweets and blogs. You have showed up in so many impactful ways in the last year. You, our wonderful community of volunteers, are amazing. Thank you!

Do you want to join our team of volunteers?

Our work, however, is not done. Now, we need you more than ever before.

  • We need people affected by ectodermal dysplasias to participate in different research projects as they arise.
  • We need you to tell your story to help others in our community know they are not alone, support our grant-writing efforts and so much more.

The need is endless and we are banking on your willingness to engage with the NFED in a meaningful way. Thank you!

You, our volunteers, are critical to the success of the NFED. We have a proud past and an even brighter future ahead with your help. Can we count on you? Thank you!

If you’re interested in volunteering, visit our Volunteer page to learn about more opportunities and to apply. I’d also love to chat with you. You can call me at 618-566-6871 or email me at We’ll do our best to find a good fit for you.

Become an NFED Volunteer

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