Thank You, Jodi, Editing Queen of the NFED

This week we celebrate Jodi Edgar Reinhardt’s 25th Anniversary with the NFED.  Jodi started a full-time position with us, fresh out of her Master’s program in 1994, but her journey started during her internship in the early 1990s.  Jodi has dedicated her career to the NFED, specifically the NFED families.  She considers the NFED family…

Ongoing Research Into Skin Lesions In Patients Affected By AEC and EEC

By Maranke Koster, Ph.D. The long-term goal of our research is to design novel therapies for the treatment of skin and cornea lesions that occur in ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) and ectrodactyly-ectodermal-dysplasia-clefting (EEC) patients. In the past, many of you have donated skin biopsies to support this research. These skin biopsies were used…

What does a smile mean to you?

For Rachel Nicksich, attending the NFED Kays’ Kids Camp was the best experience of her life. It inspired her to become an NFED Smile Maker and give monthly, despite her limited income.

Families Raise Awareness Around the World

Our community worldwide united online in February for Ectodermal Dysplasias Awareness Month! Our goal this year was to raise awareness about the symptoms, its impact on teeth and need for the Ensuring Lasting Smiles Act to get coverage for treatment. And you helped us do that!

What’s going on at the NFED?

Find out what the National Foundation for Ectodermal Dysplasias recently published in research, will be announcing about the Ensuring Lasting Smiles Act and is planning for 2019.

Ectodermal Dysplasias Awareness Month 2019

Join others affected by ectodermal dysplasias worldwide to unite for Ectodermal Dysplasias Awareness Month in February. Help us raise awareness of these rare conditions. Our campaign is focused on awareness of the symptoms, its impact on teeth and the need for a law in the United States to get coverage for treatment.

One of Our Smile Makers

At the National Foundation for Ectodermal Dysplasias (NFED), one thing is for sure, we love our families! When we support our families, we certainly appreciate when they support us back. One of the most loyal and sustaining ways to support the NFED is through our monthly giving program, the Smile Makers. One of our amazing…

Becky Abbott Joins NFED Staff

Meet the newest member of the National Foundation for Ectodermal Dysplasias staff. Becky Abbott will help us serve families affected be ectodermal dysplasias by managing the treatment and research programs. Learn why our mission is personal for this rare disease advocate.