Patient Advocacy

From Mary Kaye Richter, Executive Director, National Foundation for Ectodermal Dysplasias and Friends of the NIDCR Board Member

Anyone who has ever been involved in team sports or activities know that a team is only as strong as its weakest member and that everyone on the team must fully participate for the team to be successful. Like most issues, advocacy on behalf of the National Institute for Dental and Craniofacial Research (NIDCR) requires a team effort to be successful. Our joint advocacy efforts can result in increased funding for the Institute, in broadening of program support, and in strategic interaction among constituency groups. As I see it, there are three groups that are critical players in such a team endeavor: the scientific community, the professional community and patient advocacy groups. I remember a time when all members of the team did not share my perspective. As a result, some nonprofit groups may have been reluctant to joint the effort. However, as time has passed, a greater appreciation for the role of nonprofits has evolved, and the results have been spectacular. During the fall of 1998, two critical meetings took place. One was the organization and development of the Council of Public Representatives, an advisory group for the Director of the national Institutes of Health, and the other was the convening of a special meeting of nonprofit advocacy groups by the NIDCR. While the former was a positive step in the right direction, the latter was nothing less than monumental. At last advocacy groups had a forum for their concerns and the staff at the NIDCR listened very, very carefully.

This spring NIDCR invited leaders from over thirty patient advocacy groups to meet again. (See the link for Training Oral Health Advocates 2000 Report.)