Sickle Cell Disease Association of America

Sickle Cell Disease Association of AmericaThe vision for a national coordinated approach to addressing issues related to sickle cell disease was unveiled in 1971 when representatives of 15 community sickle cell organizations met at "Wingspread," a Racine, Wisconsin conference center, as guest of the Johnson Foundation. Out of that meeting, the National Association for Sickle Cell Disease was created. The name was changed to Sickle Cell Disease Association of America, Inc. in 1994. Our mission, however, remains the same:

"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."

The Strategies defined at the "Wingspread" meeting laid the foundation for today’s Association.

  • Provide leadership on a national level to create awareness of the negative impact of sickle cell disease on the health, economic, social and educational well-being of the individual and his or her family and to create awareness of the requirements for resolution.
  • Prepare and distribute substantive educational materials, written and visual, about the sickle cell disease problem for all relevant segments of our society.
  • Organize and/or participate in national and regional educational conferences. Develop and promote the implementation of service programs that will be in the best interest of the affected population.
  • Develop positions and promote favorable resolution of issues and activities that could have an adverse effect on sickle cell programs or the affected population.
  • Assist in the organization and development of local chapters.
  • Provide ongoing technical assistance to members and other interested groups or organizations.
  • Encourage adequate support for research activities leading to improved treatment and eventual cure.

 

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