Patient 
  Advocacy 
  Council

The Friends of NIDCR Patient Advocacy Council is comprised of non-profit organizations who work together to 1) support oral health research and NIDCR and 2) transfer oral health research from bench to bedside. 

At the end of the day, research is conducted to improve the health and lives of others. Below are quotes, stories, photos and videos that demonstrate the impact the Patient Advocacy Council has on the lives of many.

The FNIDCR PAC is co-chaired by Kathy Hammitt and Mary Fete.

View all the current members of the Patient Advocacy Council.

  


National Foundation for Ectodermal Dysplasias (NFED)

www.nfed.org
NationalFoundationforEctodermalDysplasias @NFED_ORG

The National Foundation for Ectodermal Dysplasias (NFED) is the worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to those living with these disorders. NFED offers a range of educational resources and events to meet the changing needs of those affected by the different types of ectodermal dysplasias.



I Will Never Have a Perfect Smile! by Alex Gaillard


I have ectodermal dysplasia, and for me, that meant that I would never have a perfect smile.
Since growing up, I’ve always known there was something off about my teeth. They didn’t grow in like my friends’. There were too many holes and not enough teeth growing in. My dentist noticed this in my smile, as well as my brother’s. I wouldn’t learn this until years later, but it was upon his recommendation that my parents would contact a geneticist and we would first hear about ectodermal dysplasia.





These photos were taken on Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19, 2017. The NFED took 175 people to Capitol Hill educate legislators about ectodermal dysplasias, the challenges their families face with this disorder and the need for a federal bill to mandate health insurance benefits for dental care of the condition.