It’s time to reunite with family!

The excitement in the National Foundation for Ectodermal Dysplasias (NFED) office is beyond wild! Finally, after two long years of not holding conference, fighting the ongoing pandemic, and social distancing, we are finally going to reunite our family!

The NFED staff is planning an amazing conference to celebrate our 40th anniversary. Do you hear that? Forty years of supporting our community is a milestone to celebrate. With a strong foundation laid by our Founder, Mary Kaye Richter, the NFED has grown and flourished over the past 40 years.

Today, we proudly serve 9,623 individuals both in the U.S. and across the world. We have sponsored more than $3,639,263 in research, funded $477,035.20 in treatment for our families, and held 38 family conferences over these years. Yes, we have lots to celebrate, and we want to celebrate with you and your families!

Many members of our Scientific Advisory Council (SAC) will be attending conference to provide you with the most accurate information about the syndromes and how to manage the symptoms. We have an engaging and dynamic Kids Camp planned with lots of fun for the kiddos. There will be a pool party, anniversary celebration, and many more events to enhance your experience. Whether this is your first conference or you have been to many, Family Conference will make an indelible, life-long impact on your lives. Please join us!

We feel it is so important that you have the opportunity to connect with one another and for the kids to see and meet other kids like them. These connections are the most important part of conference. Making these connections gives everyone the opportunity to develop lifelong support systems and friendships. Learning from each other is as important as the medical information that you will receive.

How We Are Handling Covid-19

However, there are some things for us to think about as we are still not “out of the woods” with COVID-19. Our primary concern is to make sure you all are safe and stay healthy. Please consider carefully if this is the right time for you and family to attend conference. If you or your family are at greater risk for infections, please talk to your doctors.

Wearing a mask at conference is one way to stay safe and healthy.

Although not mandated, we are asking everyone to wear a mask and to respect each other’s decisions. We are doing everything we can to make the conference a safe environment for you and your family.

If 2022 isn’t the right year for you to come to conference, we understand. We will be offering the opportunity to access conference sessions later in the year so you won’t miss out on getting the latest information from our scientific and medical advisors. Virtual conference details will be communicated once they are finalized.

The Scientific Advisory Council provided recommendations to keep conference attendees safe and healthy.
These wonderful health care providers and researchers on the Scientific Advisory Council donate their time and expertise to serve our families.

Please take a few minutes to read this letter from our SAC. Most of these members have been with the NFED for many years. They are part of our community and a trusted source for valid information. 


How to Sign Up for Conference

Register for conference here.  If your family is in need of financial assistance to attend, you can apply for a scholarship at the time of registration. The deadline to apply for a scholarship is Friday, April 1.

We look forward to seeing you in July. We will be celebrating BIG time.  Please join us!

Please contact the NFED office with any questions at 618-566-2020.

I miss seeing all of you in person!

Sending warm regards to you and your family. I can’t wait to see all of you and the smiles of all of the beautiful children. Laughter will fill the hallways and joy will be in our hearts when we once again reunite with our NFED family!


8 Reasons to Attend the NFED Family Conference

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