We don’t know about you but we sure miss seeing our NFED families! Our staff gets our “family fix” when we get to see all of you each July at the Family Conference. Two years without a Family Conference? Well, that’s just plain torture!

But, it’s the safe thing for all of us and will make our 2022 Family Conference one heck of a reunion and party.

The next best thing has been seeing your faces in our webinars in our 2021 Conference from Your Couch Webinar Series. Held as Zoom meetings, attendees get to see one another. It’s pure joy to see those happy faces!

And that’s just the start. If you participated in either of our first two webinars this year, you learned great information about dental treatment as well as eye concerns as they relate to ectodermal dysplasias.

Here are the next three webinars for May, June and July that you won’t want to miss:

Ectodermal Dysplasias 101: Complex Syndromes Explained Simply

May 11

Drs. Butcher and Fete often present together to provide information for all ages. Dr. Butcher practices medicine for adults and children while Dr. Fete is a retired pediatrician.

Drs. Tim Fete and Clayton Butcher will tag team present this webinar. They will go beyond explaining just what ectodermal dysplasias are and the body parts it affects – although that is a lot of content! They will dive deeper into a wide range of health topics affecting many individuals, no matter what sub type of ectodermal dysplasia you have.

Do affected individuals have an increased chance of allergies? Can you expect your child to have normal cognitive development? Do ectodermal dysplasias affect your immune system? How is your respiratory system impacted?  Learn answers to these questions and more in this comprehensive webinar. Information is for all ages!

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Ectodermal Dysplasia: How to Treat Your Skin, Hair and Nails

June 8

The skin, hair and nails are three of the primary markers for defining what is an ectodermal dysplasia. Dermatologist, Dr. Elaine C. Siegfried, will highlight many of the ways the conditions can impact these three. She covers many of the symptoms such as dry skin, papillomas, sparse hair and curved nails.

You will also learn practical tips and suggestions for how to maintain and treat these issues. Should you try artificial nails? What are best practices for healing skin erosions? What can you do to care for brittle hair? Whatever your skin, hair or nail issue is, attend this webinar to ask your questions and learn more. 

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A Message from the Executive Director and Syndrome Meet Ups

July 13

NFED Executive Director Mary Fete will start by officially kicking off our 40th Anniversary year-long celebration! Find out what’s planned and how you can join in the fun. You will also learn about numerous programs and resources the NFED offers to help you as you manage your ectodermal dysplasia – most of which are free! You will also get to meet the NFED staff and put a face to the name of the person who may have helped you in your journey so far.

Finally, you will be put in a breakout room based on the type of ectodermal dysplasia you or your loved one has. For example, there will likely be a room for hypohidrotic ectodermal dysplasia (HED), incontinentia pigmenti (IP), ankyloblepharon-ectodermal defects-cleft lip and/or palate syndrome, etc. It will all depend on the syndromes our webinar attendees have. In these sessions, you can discuss topics and questions that pertain just to your syndrome!

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How to Register

Have you heard enough that you know you need to take action now? Do you love the idea of getting to ask your questions and have real conversations with our expert physicians, dentists and families?

Then, it’s time to register for these budget friendly webinars! They will be recorded and available for seven days following the live event. But, you must register for the webinar in order to watch the recording. Of course, if you have questions, you will definitely want to attend live!

Register for Webinars

See you on Zoom!

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