As the outbreak of the coronavirus (COVID-19) continues to spread, the National Foundation for Ectodermal Dysplasias is committed to supporting you with information and resources. Follow this page or sign up for emails at the bottom of this page to get the most up-to-date information.
This is a new virus so there are no published studies to know how COVID-19 specifically impacts individuals affected by ectodermal dysplasias. However, individuals who have issues with their respiratory or immune systems are likely to have an increased risk of more severe infection.
Because of this, we know that many of you may be scared. Now is the time to stay calm and know we are here to help.
News from the NFED
- 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.
Your NFED family is always here for you. Connect with others who are affected by ectodermal dysplasias virtually in our private Facebook Groups ›
Drs. Tim Fete and Clayton Butcher present information on common ectodermal dysplasias health concerns. including information about COVID-19.
Download this sample letter to send to your physician requesting the doctor write you a letter saying you should be prioritized for the COVID-19 vaccine because of your medical condition of ectodermal dysplasia. Customize the letter for your syndrome. Also, here’s a letter from the National Organization for Rare Disorders saying people affected by rare diseases should be prioritized for the vaccine.Download Letter Template
In this pre-recorded Facebook Live, Executive Director Mary Fete and pediatrician, Dr. Tim Fete, share important information about the coronavirus, how to stay healthy, and ways to help you and your children cope.
Supporting You. Supporting Each Other.
Our NFED staff is working remotely but ready and available to talk to you. Contact our office at 618-566-2020 from 8 a.m. to 4 p.m. CDT if you have questions, are seeking information or just want to talk.
Let Us Know
If you or your loved one with ectodermal dysplasia is diagnosed with COVID-19, please let us know. This information will help us understand how it’s impacting our community.
We encourage you to get updates about COVID-19 from reputable sources such as the following:
- CDC Coronavirus (COVID-19)
- CDC What’s New
- CDC Frequently Asked Questions
- World Health Organization (WHO) Coronavirus disease 2019 outbreak
- HealthyChildren.org – The American Academy of Pediatrics offers tips on how to care for kids with special health needs during the COVID-19 outbreak.