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.

How to File Your Ectodermal Dysplasia Insurance Claims Like a Pro

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

Live Webinar Presenter – Sarah Briggs, Ozark Prosthodontics Duration: 60 minutes Price: Free Families affected by ectodermal dysplasias in the United States have faced problems for decades in getting their health insurance to pay for the dental care they need. Too often, their claims are rejected because the care is deemed “cosmetic.” Or, families have…

Find Answers to Your Most Pressing Health Concerns Caused by Ectodermal Dysplasias

Date: Apr 8, 2020
7:00 pm to 8:00 pm

Do you have questions about your health as it relates to ectodermal dysplasias? Get answers in this free webinar. Drs. Butcher and Fete will be live to answer as many as they can. They will also present information about common health concerns both children and adults who have ectodermal dysplasia experience.

Alex’s Super Smiles 5K

Date: Apr 18, 2020
8:00 am

Alex’s Super Smiles 5k hosted by The Carroll Family in honor of their son, Alex, who is affected by odonto-onycho-dermal dysplasia syndrome.

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

Date: Jun 10, 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.

2020 Family Conference

Date: Jun 22, 2020 to Jun 24, 2020
12:00 am

Join us in Washington D.C. to connect with families affected by ectodermal dysplasias, share your story and be empowered to advocate for your family. You will leave a support network in place for your journey with ectodermal dysplasia.

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.

How to Treat Nasal Rocks, Ear Wax and Other ENT Issues

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

Does your child have problems with smelly nasal discharge? Have you noticed that ear wax accumulation is affecting your hearing? Dr. Hopkins will present information on the different ways that ectodermal dysplasias can affect the nose, ears and throat. Tune in to hear suggestions for how to treat those concerns.