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Mission and Vision

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  • Mission and Vision

  • The Voice of Sickle Cell

    No one should suffer in silence. The Sickle Cell Disease Association of America (SCDAA) was founded in 1972 to give a voice to the thousands of Americans across the country who live with sickle cell disease and their families. We bring together individuals, organizations and stakeholders as we elevate the public’s understanding and awareness of this debilitating, chronic disease. We are proud to be 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.

  • Our Mission

    To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.

  • Our Vision

    To be the leader promoting and advancing initiatives focused on people affected by sickle cell conditions worldwide.

What We Do

  • We promote the search for a cure for all people in the world with sickle cell disease.
  • We join with our 55-plus community-based member organizations located in 30 states to collectively serve over 500,000 children and adults who are living with or impacted by sickle cell disease and their caregivers.
  • We connect SCD warriors to our Clinical Trial Finder – a centralized, simple-to-navigate website to help people with sickle cell disease, their families and caregivers find clinical trials.
  • We train hundreds of Community Health Workers (CHWs) across the nation to assist families and help them manage their health care strategy and access to care.
  • We advise on current medical news affecting you through SCDAA’s Medical and Research Advisory Committee (MARAC). The committee, comprised of world renowned SCD experts, provides vital disease, trial and therapy updates as they happen.
  • We lead by building leadership skills. The Leadership Academy helps community-based organizations and SCD professionals become even more productive, with capacity building and information.
  • We advocate so patients and families know they are not alone. Together with our community-based organizations, we have created a strong network that includes caregivers, clinicians, stakeholders and experts. We also coalesce around legislative initiatives and use ambassadors to help raise awareness.
  • We partner together with organizations like the American Red Cross, National Institutes of Health (NIH), Health Resources and Services Administration (HRSA), Centers for Disease Control (CDC) and many others to support sickle cell warriors and raise awareness.

Our Six Areas of Emphasis

Research

SCDAA promotes basic and translational research and supports initiatives to increase community participation in clinical research. Basic and clinical research efforts are important to expanding knowledge of the pathophysiology of SCD and to ensure smooth transition of scientific advances into clinical trials.

Public Health Education

To promote public awareness and education, SCDAA print and digital publications include a newsletter, a website, social media platforms and a wide array of educational materials 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 health care workers on the needs of this population and educate the 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.

Professional Health Education

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 and on the impact of sickle cell trait.

Patient Services

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 continuity of care throughout their lives. Similarly, individuals carrying the SCT often are unaware that their children are at increased risk for the disease.

Community Services

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 World Sickle Cell Day, which is celebrated annually on June 19, and National Sickle Cell Disease Awareness Month, which is acknowledged annually in September.

Support to Global Organizations and Practitioners

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.