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The 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.
Through the years the Association has provided effective leadership in positioning sickle cell disease and its related problems as a major public health care concern and, indeed a universal problem. This page on the Web Site will present periodic insights into SCDAA historical footnotes that have positioned sickle cell disease as a major public health concern and indeed, a Global health challenge. Please visit often.
The Sickle Cell Disease Association of America, Inc. servers as the nation's only organization working full time, on a national level, to resolve issues surrounding SCD and trait. Since 1971, the organization has been on the forefront of improving the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions.
About Sickle Cell Disease
Sickle Cell Disease (SCD) is the most common genetic disorder in the United States. Present at birth, SCD consists of a group of inherited red blood cell disorders. The affects of SCD can be devastating with symptoms consisting of sever pain, hand & foot syndrome, anemia, acute chest syndrome, vision loss, stroke and in many instances, death. It is particularly common amon those whose ancestors come from sub-Saharan Africa, Spanish-speaking regions in the Western Hemisphere, Saudi Arabia, India, and Mediterranean countries such as Turkey, greece and Italy.
SCD Quick Facts
- Approximately 3 million people in the United states and 300 million worldwide are carriers of SCD, meaning they have Sickle Cell Trait.
- SCD affects an estimated 90,000 - 100,000 Americans.
- 1800 - 2000 infants are born with SCD each year in the United States, primarily African American and Hispanic.
- Worldwide, over 300,000 infants are born with SCD.
- People with the most severe form of SCD may have a 2 - 3 decade shorter life expectancy.
- 20 - 30% of children with SCD experience stroke, which commonly results in cognitive impairment.
- Indivdiuals living with SCD average 200,000 emergency department visists annually.
- SCD patients experice 18,000 - 20,000 or more blood transfusions per year.
- Elizabeth Samolis
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