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[ Recorded presentation ] Recorded presentation

National Partnerships: A unique aspect of the Genetics Education and Needs Evaluation (GENE) Project

Fredericka Wolman, MD, MPH1, Michele Puryear, MD, PhD2, Penny Kyler, MA, OTR3, Roxane M. Brown4, Susan A. Ghanbarpour, MA4, Jennifer Cernoch, PhD5, Aida L. Giachello, PhD6, and EmyLou Solomon7. (1) March of Dimes, 1275 Mamaroneck Avenue, White Plains, NY 10605, 914-997-4725, fwolman@marchofdimes.com, (2) Genetics Services Branch, Children with Special Health Care Needs, Maternal Child Health Bureau, Health Resources and Services Administration, Department of Health and Human Services, 5600 Fishers Lane, Room 18-05, Rockville, MD 20857, (3) Genetic Services Branch, Health Resources and Services Administration (HRSA), Maternal Child Health Bureau, 5600 Fishers Lane, Parklawn Bldg. Room 18A-20, Rockville, MD 20857, (4) Genetic Alliance, 4301 Connecticut Avenue, NW Suite 404, Washington, DC 20008-2369, (5) Family Voices, 3411 Candelaria NE, Suite M, Albuquerque, NM 87107, (6) Midwest Latino Health Research, Training and Policy Center, University of Illinois at Chicago, Midwest Latino health Res. Ctr, 1640 W. Roosevelt Rd. #636, Chicago, IL 60608, (7) Office of the Medical Director, March of Dimes, 1275 Mamaroneck Ave., White Plains, NY 10605

The goal of the GENE project is to investigate and improve consumer access to culturally and linguistically appropriate genetics information, resources and services to assist underserved populations in making informed decisions about their health. The partnering of national organizations and their local networks was identified as a potentially effective method of maximizing limited local and national resources to achieve this goal.

Three national organizations, March of Dimes, the Genetic Alliance and Family Voices, with the Genetic Services Branch of MCHB of HRSA, have committed to working together to develop strategies for using their collective resources to improve outreach regarding genetic education to underserved communities. The first step was to become acquainted with each other’s mission, goals, structure and resources. To identify how best to utilize their local networks in partnering with local community projects, each organization reviewed their own priorities and infrastructure. Several critical components are necessary for successful collaboration. Ultimately, trust is essential to successful partnering and requires that expectations be explicit, roles and responsibilities clearly outlined, and that communication is effective and ongoing.

This session will discuss the processes required to achieve this partnership and highlight the successes and challenges of this unique strategy for addressing underserved community needs.

This work is supported by a cooperative agreement with MCHB of HRSA.

Learning Objectives: At the completion of the session, participants will

Keywords: Underserved, Partnerships

Related Web page: www.marchofdimes.com/geneproject

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

[ Recorded presentation ] Recorded presentation

Community-Based Participatory Approaches to Genetics Education in Underserved Communities

The 132nd Annual Meeting (November 6-10, 2004) of APHA