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For more than 35 years, the Sickle Cell Disease Association of America, Inc. (SCDAA) and its 50-plus member organizations and affiliates have demonstrated how community-based organizations can work as partners with medical facilities local and state government agencies to pursue national health care objectives. SCDAA has recognized that one agency cannot meet all the needs and challenges of those living with sickle cell disease (SCD) and their families. As part of its strategic efforts and to enhance its effectiveness, SCDAA has partnered with government, private and other not-for-profit agencies and programs at the local, state, and national levels. These have included National Association for the Advancement of Colored People (NAACP), Urban League, National Institutes of Health (NIH), Health Resources and Services Administration (HRSA), Centers for Disease Control (CDC), the United Way, the Robert Wood Johnson Foundation and many others.
SCDAA continues to recognize how critical it is to garner the needed support for the social and public health aspects of SCD as fundamentals to a comprehensive plan that meet the needs of this population. Over the last two decades, SCDAA has successfully developed partnerships with Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB) and Centers for Disease Control (CDC) to develop a number of education, treatment services, delivery and evidence-based efforts to improve the lives of persons with SCD and their and to educate and inform practitioners, service providers and the general public.
In collaboration with SCDAA member organizations and other stakeholder groups, SCDAA's national efforts involve six broad areas of emphasis:
SCDAA has functioned primarily in an advocacy role in promoting basic and translational research. SCDAA sponsors scholarships to high school students with sickle cell disease to help them pursue their educational goals. The Kermit B. Nash Scholarship awardees are selected from nominations from our member organizations. SCDAA also sponsors Post Doctoral fellowships for young investigators participating in sickle cell disease related research. SCDAA also supports initiative to increase community participation in clinical research. Basic and clinical research efforts are crucially important to expand knowledge of the pathophysiology of SCD and to ensure smooth transition of scientific advances into clinical trials.
To promote public awareness and education, SCDAA publications include a newsletter, a website and a wide array of educational materials (many translated into Spanish and French Creole) to help educate parents on taking care of their children with the disease, and teach affected individuals how to manage their disease. Through our member organizations, we train healthcare workers on the needs of this population, and educate the general-public about sickle cell disease and sickle cell trait. SCDAA also educates local and federal policymakers on SCD and sickle cell trait (SCT) so that they can make informed decisions when making legislative decisions about sickle cell disease.
SCDAA sponsors professional development programs at its annual conference and provides annual technical assistance training for all member organizations. The annual conference lectures include information on the latest clinical, research, and psychosocial interventions in sickle cell disease as well as information on the impact of sickle cell trait.
SCDAA supports and facilitates partnerships between Comprehensive Sickle Cell Centers (and other medical centers) and SCDAA member organizations which provide genetic testing and counseling, case management and psychosocial support for individuals and families impacted by sickle cell disease. SCDAA's member organizations also provide insurance counseling, pharmacy assistance, financial aid, coping skills development, and other supportive services and referrals. Suffering from an inherited, chronic disorder, patients with SCD require a continuity of care throughout the entirety of their lives. Similarly, individuals carrying the SCT often are unaware that their children are at increased risk for the disease.
SCDAA and its member organizations engage in community outreach efforts throughout the United States and Canada. Activities include campaigns to build awareness of SCD and related conditions, educational health fairs, camps for children with SCD, genetic trait testing and follow-up counseling, referral networks, scholarship programs and other special activities. Much of this work is highlighted during National Sickle Cell Disease Awareness Month, which is acknowledged annually in September.
SCDAA provides ongoing technical support and assistance to providers of SCD-related services in locations outside of North America. Principal among these are providers of such services in African nations, which have a high prevalence of SCD and SCT. SCDAA advocates for national initiatives to provide genetic counseling, newborn SCD screening, infant and pre-natal care, pediatric care, and an increased number of adult facilities with expertise in SCD. Likewise, SCDAA advocates for increased and coordinated federal efforts to support research that will lead to the development of new treatments for SCD, and for a comprehensive effort to discover a cure for the disease.