"To advocate for and enhance our membership's ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease.
Representatives from 15 different community-based sickle cell organizations came together at Wingspread, a community center, as guest of the Johnson Foundation.
The name was changed in 1994 to the Sickle Cell Disease Association of America, Inc. Over the course of several years, the organization has grown into over 40 different branches.
The organization has partnered with several different medical facilities, local and state government agencies to pursue national health care objectives.
Some of the organization's partnerships include: National Association for the Advancement of Colored People (NAACP), National Institutes of Health (NIH), Health Resources and Services Administration (HRSA), Centers for Disease Control (CDC), United Way of America, and the Robert Johnson Foundation.