What was it like to be diagnosed with ectodermal dysplasia in the early 1980s? NFED founder, Mary Kaye Richter, looks back at the Foundation’s humble beginnings, its first decade of accomplishments and the extraordinary people and circumstances that fueled its success.
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.
Ectodermal Dysplasia Treatment Videos Now Available
The one thing all our families want is information about ectodermal dysplasia treatment. You want to know what to expect for you or your child. You are seeking treatment options. You are looking for answers. That’s where the National Foundation for Ectodermal Dysplasias comes in. We now have six free videos of educational workshops from our 2017 Family Conference available to watch. You can hear from our experts, see their presentations and learn.
Ectodermal Dysplasias Dental Treatment Center Opens in New York
Families in New York now have a National Foundation for Ectodermal Dysplasias (NFED) Dental Treatment Center in their community. We are excited to announce our new partnership with the New York Center for Orthognathic and Maxillofacial Surgery (NYCOMS) to provide quality dental care and more affordable costs for individuals affected by ectodermal dysplasias. Helping families affected…
Organizing Medical and Dental Information
It is a good idea for you to keep your medical information in a personal file. People tend to change physicians more frequently as jobs and insurances change. You may choose to enter medical or dental information in a laptop, or keep hard copies in a notebook or binder. Dating all of your entries will…
Keegan’s Dental Adventure – Part 3
(This story is part three of a three-part story. Read part one and part two.) By Lindsey James People are often surprised to learn that Keegan wears an upper denture, and I’m fairly certain no one has ever noticed that he has no lower teeth. He is able to speak clearly and doesn’t have much…
Keegan’s Denture Adventure – Part 2
(This story is part two of a three-part story. Read part one.) By Lindsey James I have always enjoyed going to the dentist. As a child, my great-aunt worked as an assistant to my dentist. Visits to Dr. Gary meant seeing Aunt Linda… and getting to pick a prize from the beloved treasure chest. I…
Are you a Repeat Offender?
Charley Richter has attended 27 NFED National Family Conferences and Anil and Sean Vora have both attended 25. How close are you to reaching them? We will recognize our “repeat offenders” during Wednesday’s opening session. If you have attended at least five conferences, be prepared to be recognized!