Don't wait! Registration is closing for the Stand Together Advocacy Conference at midnight on 5/20. REGISTER NOW

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…

A Parent’s Persistence Pays Off

Armenian eleven-year-old artist, Nika, has already had 4 sets of dentures thanks to her parent’s persistence and her dentist’s participation and willingness to go on the dental journey.

8 Tips for Getting Your Child To Wear Dentures

We asked our families for their best advice. Here’s what they said. Bribery! Determine treats or prizes that the child would earn for wearing their dentures “x” amount of time each day. Increase the times until he or she is wearing them all day, every day. You could do a star chart if they are…

Freshman Entrepreneur Raises Money to Honor Sister

Avani Deshpande is not your typical ninth grader. She’s a compassionate entrepreneur who is raising awareness and funds for ectodermal dysplasias in honor of her sister. Avani’s passion for volunteering arose from watching her younger sister Matali live with ectodermal dysplasias. She wanted to make a difference by raising funds and awareness for the National…

Dentures for Kids

The NFED has always strongly advocated that children with ectodermal dysplasia get dentures by the time they start Kindergarten. Find out why and how the NFED can help pay for them.

2016 Annual Impact Report

A Year of PROMISE. Perseverance. GROWTH. Creativity. Celebration. We are very excited to share with you the 2016 Annual IMPACT Report for the National Foundation for Ectodermal Dysplasias (NFED). In it, you can read how you, our families and supporters, have impacted on all areas of our mission. We thank everyone who supported us n…

NFED Members Participate in Advocacy Days

Advocacy continues to be a major emphasis for us in 2017.  While we continue to plan for our Ectodermal Dysplasias Advocacy Day on Capitol Hill in July, we also recently participated in some other advocacy days. We are grateful to Becky Abbott, Amy Leverenz and Marc Steingesser for representing the National Foundation for Ectodermal Dysplasias…