We invite you to attend or support the events going on within our NFED community. Family Conferences, NFED @Home family gatherings, fundraisers, or awareness events are listed. If you are hosting a walk, golf tournament, BBQ etc. for the NFED, contact us at info@nfed.org with the details so we can list it here.

Virtual Kays’ Kids Camp and Teens Program – Week 3

Date: Jul 15, 2020
12:00 am

Today, we are excited to kick off week 3 of our At Home Edition of Kays’ Kids Camp and Teens Program! While you are sheltering in place and staying safe, your kiddos can connect with other children affected by ectodermal dysplasias and their siblings. We have fun, age-specific activities scheduled for your 0-17-year-olds. Have your…

Webinar: Let’s Talk EEC

Date: Jul 16, 2020
7:00 pm to 9:00 pm

Have you always wanted to “meet” another person with EEC syndrome? Attend this free meeting to connect with others, share your story and ask questions.

Virtual Kays’ Kids Camp and Teens Program – Week 4

Date: Jul 22, 2020
11:00 am to 6:00 pm

Today, is week 4 of our At Home Edition of Kays’ Kids Camp and Teens Program! While you are sheltering in place and staying safe, your kiddos can connect with other children affected by ectodermal dysplasias and their siblings. We have fun, age-specific activities scheduled for your 0-17-year-olds. This week is about stories, scavenger hunts…

Webinar: Let’s Talk HED

Date: Jul 23, 2020
7:00 pm to 9:00 pm

Families affected by hypohidrotic ectodermal dysplasia are invited to this two-hour emotional support session. Connect with other families to listen and to share your story and wisdom!

Virtual Kays’ Kids Camp and Teens Program – Week 5

Date: Jul 29, 2020
11:00 am to 6:00 pm

Today is the last week of our At Home Edition of Kays’ Kids Camp and Teens Program! While you are sheltering in place and staying safe, your kiddos can connect with other children affected by ectodermal dysplasias and their siblings. We have fun, age-specific activities scheduled for your 0-17-year-olds. Have your children take our Summer…

Webinar: Let’s Talk AEC

Date: Jul 30, 2020
7:00 pm to 9:00 pm

Do you have AEC/Hay Wells/Rapp Hodgkin syndrome? This webinar is your chance to connect with others, ask questions and share your story!

Ectodermal Dysplasias 101: Learn About Different Types and How They Can Affect Your Body

Date: Aug 12, 2020
7:00 pm to 8:00 pm

With 100+ different types of ectodermal dysplasias, understanding them all can be overwhelming! Watch this free webinar with pediatrician Tim Fete. He gives a comprehensive overview of the conditions to help you better understand what ectodermal dysplasias are, some of the most common types and what body parts can be affected.

Learn How New XLHED Clinical Trial Could Affect Future Generations of Your Family

Date: Oct 14, 2020
7:00 pm to 8:00 pm

For 30+ years, the National Foundation for Ectodermal Dysplasias (NFED) has led the charge to develop a treatment for the common type of ectodermal dysplasia, x-linked hypohidrotic ectodermal dysplasia (XLHED). For the past few years, we have worked with espeRare to help develop a unique, pre-natal treatment. Register for our free webinar to hear the latest progress on the trial, how to participate and what the results could mean for families affected by XLHED.