Learn what to expect, where to go, what to say and more if you are attending the 2017 Ectodermal Dysplasias Advocacy Day on Capitol Hill.
Webinar: Advocating for Ectodermal Dysplasias
Presenters – Becky Abbott and Beth Pond, Chairs, NFED Advocacy Committee This webinar took place on Tuesday, May 16, 2017 and was recorded. Our advocacy goal is to get a federal law passed that would guarantee that insurance companies would be mandated to pay health insurance benefits for necessary medical care and treatment due to…
Advocacy Strategy Shifts to Federal Level
Again, over the past month, we have received numerous calls from individuals who are desperately trying to get insurance coverage for their or their child’s dental treatment. It is exhausting!
You’ll Never Be Alone Again
By Maureen Having ectodermal dysplasia can be hard. Especially growing up. I had never met another person with ectodermal dysplasias until I went to my first National Foundation of Ectodermal Dysplasias (NFED) Family Conference in 2014 at the age of 46. I had always felt alone. I don’t know which type of ectodermal dysplasia I…
Ectodermal Dysplasias Awareness Month 2017
An estimated 3.5 of 10,000 people are affected by ectodermal dysplasias. Very few people have heard about these conditions or know about the challenges people with it face. You can help us change that number. Join the National Foundation for Ectodermal Dysplasias (NFED) in our worldwide effort this February to raise awareness and funds for these…
Happy Holidays!
Wishing you and yours all the beauty of this magical holiday season. We wanted to share with you in this video some of the magical people that we get to help all year long. Happy holidays from all of us at the National Foundation for Ectodermal Dysplasias!
Volunteers Helped Run Family Conference
by Lea Richardson Our Volunteer Spotlight this month is the Family Conference Committee and all of the Family Conference volunteers. They pitched in and helped with Setting up and taking down, Manning the registration, promotional items, volunteer and fundraising tables, Facilitating and presenting in Workshops, Monitoring the Silent auction and distributing the mystery bags, Executing the Create-a-Smile, Taking…
Volunteer Spotlight: Our Website Committee
Building an all-new NFED.org is a major undertaking! Luckily, we have five volunteers who are advising us at every step of the way. The research phase of the project began in June of 2015. We are excited about how the site is developing. The big reveal will be in November. For their hard work and…