The excitement in the National Foundation for Ectodermal Dysplasias (NFED) office is beyond wild! Finally, after two long years of not holding a Family Conference, fighting the ongoing pandemic, and social distancing, we are finally going to reunite our family. It’s critical that we do everything we can to keep you healthy at Conference. Please read what our Scientific Advisory Council and staff are asking of all who attend.
A team of researchers have published findings from the first longitudinal study of COVID-19 and HED. Find out what the risks and what they recommend to prevent them.
We offer key information to help you determine with your physician whether or not you should get the COVID-19 vaccine.
Should you get the COVID-19 vaccination if you have ectodermal dysplasia? We’ll share with you our thoughts as well as those from the National Organization for Rare Disorders.
Many of our communities have opened up to varying degrees during the past few weeks – and right at the time that summer temperatures are climbing. New safety measures for living in this COVID-19 world may bring extra challenges for people affected by ectodermal dysplasias. We have tips and resources to help you.
Mary Fete and Dr. Tim Fete share tips for helping teens with ectodermal dysplasias cope with life during the COVID-19 pandemic.
There are many emotions that we are all experiencing throughout these days of uncertainty. It’s highly likely that each of us will travel through the stages of grief. Some days, the stress can feel so heavy. It’s important to recognize and accept that this is OKAY! While our situations and personal experiences may be different, we’re all learning how to accept and cope with the changes in our lives as a result of COVID-19
You may be worried about how COVID-19 could affect your loved ones who are at higher risk. And that’s stressful. Follow these practical steps to keep you and your family healthy. Your NFED family is here for you!