Chicago proved to be a sweet home for our 38th Annual Family Conference! We welcomed the third largest gathering of families affected by ectodermal dysplasias in history on July 11-13 with 435 people from seven countries attending. It was an extraordinary event filled with new friendships, aha moments, laughter, hugs, and even tears.
NFED Founder Mary K. Richter remembers Lee Goggin, who passed unexpectedly following a tragic accident, as a man among men. In him, parents in the ectodermal dysplasias community saw a bright future for their own children which they now knew could include a beautiful wife and gorgeous, precious children.
Learn which of the 180+ different types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!
Understand the importance of age appropriate, medically necessary ectodermal dysplasia treatment.
Next week, we will announce several opportunities in our Autumn is for Advocacy campaign for you to make your voice heard about the need for a bill for health benefits for dental care of ectodermal dysplasias. Families, we need you to take action, to advocate.
Our families made a significant impact on Ectodermal Dysplasias Advocacy Day! We need everyone in our community to meet with their legislators. We give step by step directions. Ask them to support future legislation which will provide insurance benefits for dental care for all ectodermal dysplasias.
By Debbie Fenoglio I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia. Like many before me, I had not heard of ectodermal dysplasia. It was offered by our dentist as Jackson’s teeth were not erupting and he…
Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.