Earlier this year, we celebrated when our 10,000th person affected by ectodermal dysplasia registered with the National Foundation for Ectodermal Dysplasias (NFED). When the late Mary K. Richter’s son was diagnosed with hypohidrotic ectodermal dysplasia all those years ago and information was virtually non-existent, the best advice she got was to find another family.

And to think just 42 years ago, the medical literature estimated there were six in the world. But, a dozen families were found quickly and they decided the best thing to do was to create the NFED. If there’s anything we have learned since our founding, it’s that we are stronger together!

What Our Members Say

NFED members affected by Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) Syndrome at Family Conference.
Robert, Beth, Jack and Ashley connected at the Family Conference. Each is affected by ectrodactyly and bonded over their shared condition.

We asked some of our members what has been their biggest benefit of being registered with the NFED. Here’s what they had to say!

  1. The NFED has enabled our family to find friends who understand exactly what fears we have. It also eventually enables you to be there for other families as your child grows and you learn. I have learned so much from the moms of affected children and affected adults! I was lost but was found when I called the NFED. – K.R.
  2. Having people to talk to, a lot of whom we’ve never met! There are so many people who can help you navigate your journey. It definitely saved our little family when our Goltz baby was born almost four years ago! – J.W.
  3. All the information and available support – K. B.
  4. Lifelong friendships with real, good-hearted people. – J.H.
  5. Kindness and a place to go for answers. – S.S.
  6. Lots of excellent information and connections to the right healthcare providers. – A.B.
  7. Support and information and making great friends… Our son is still chatting online with a friend he made at the last Family Conference. – J.E.
  8. What’s “normal” for us isn’t “normal” for the rest of the world. Just having a group who understands is amazing. There’s also a lot of good advice to be found here. – T.Y.
  9. Support from others, knowing you’re not alone, and now supporting others and letting them know they’re going to be alright. – R.C.
  10. The founder, the staff, the families! The support and friendship forever! – D.R.
  11. The sense of community! Also knowing that you’re not alone going through similar medical problems. – E.H.
  12. Finding other people who don’t automatically assume you’re crazy or imagining things – G.M.
  13. Support. We could not have made it without you! – A.G.
  14. I belong! – K.D.

How to Join the NFED Family

NFED members affected by hypohidrotic ectodermal dysplasia at Family Conference.
These individuals affected by hypohidrotic ectodermal dysplasia became friends at the NFED Family Conference this summer.

Yes, if you or someone you love has ectodermal dysplasia, you belong in the NFED! If you have not yet joined the NFED and registered each person in your family who has ectodermal dysplasia, it’s never too late. When you register, you get access to our many programs, and will be the first to learn when new research opportunities and treatments for your type of ectodermal dysplasia become available.

You will also become a part of the largest community of people affected by ectodermal dysplasias in the world! The NFED is right where you belong.

The NFED is here, supporting you, supporting each other.

Join Us

What have you found to be the best benefit of belonging to the NFED? Tell us in the comments below!

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