A severe form of sickle cell disease (SCD) characterized by homozygosity for the sickle hemoglobin (HbS) gene and which acutely manifests with severe anemia susceptibility to severe bacterial infections and ischemic vasoocclusive accidents (VOA). It is a red cell disease of genetic origin which manifests with hemolytic disease and loss of red cell deformability leading to other occlusive events.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version January 2026
Newly diagnosed with
Sickle cell anemia?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
#ThroughThePain Inc.
#ThroughThePain is a non-profit organization dedicated to offering supportive services to individuals with Sickle Cell Disease and their families. The four foundational pillars are community outreach, organizing blood drives, providing mental health support, and promoting sickle cell education.
Alaafia Women Corporation
This community raises awareness to prevent Sickle Cell disease from spreading to the next generation.
Antonia Pauls Sickle Cell Disease Foundation – Uganda
To improve health, standards of living and social life for sickle cell disease victims through empowerment, counselling, provision of social activities as well as events and health care.
Bridging the Gap-Adult Sickle Cell Disease Foundation of Nevada
Bridging The Gap-Adult Sickle Cell Disease Foundation is a direct service organization that supports Sickle Cell patients and families by giving rental assistance, food assistance, clothing assistance, and funeral assistance. We also have a Support group program where we meet once a month, on Zoom. The topics of discussion are disease Management education, self advocacy and mental health
Drépanovie-association des drépanocytaires de côte d’ivoire
La DrépanoVie est une association des drépanocytaires de Côte d'Ivoire qui a pour objectifs : - d'œuvrer pour le bien être des personnes qui vivent avec la Drépanocytose ; - de donner la chance à toute personne atteinte de la drépanocytose d'avoir accès aux soins médicaux ; - de lutter pour le dépistage systématique (à la naissance) ; - d'oeuvrer pour la prise en compte de la drépanocytose comme maladie de santé publique.
FSIC American Innovation and Opportunity Fund
Mission Statement: Renewing communities through innovation and economic empowerment AIOF's mission is to gather information from target communities, develop solutions, and educate the target communities how to support the solutions through advocacy locally & nationally. AIOF's main areas of focus on are 1) Economic Empowerment and Inclusion 2) Health Care Equity 3) Technology Inclusion
Genèsic Nonprofit Organization
The mission of Genèsic Nonprofit Organization is committed to promoting awareness of Sickle Cell Anemia through educational programs and providing health care resources in communities with health disparities.
HECI Medicine Incorporation
The objectives of HECI Medicine is to provide dependable access to affordable medicine and diagnostic tools to patients in Africa affected by rare diseases, collaborative with the scientific community to accelerate drug development for rare diseases therapies that are specific to populations in Africa, and collaborate with other rare disease organizations to ensure equitable access to health.
Life and Family Foundation, VA
Helping individuals affected by sickle cell livevthrough advocacy, education, and empowerment.
Organisation for Sickle Cell Anaemia Research (OSCAR) Sandwell Co Ltd
Working together with service users (clients), voluntary and statutory services and stakeholders to support and improve the quality of life for people affected by Sickle Cell and Thalassaemia.
Pathways To Trust
To elevate the patient's voice to increase access to care and eliminate bias by bringing stakeholders together.
Petronille Healthy Society
Our mission is to support the rare disease community and advance health equity through advocacy, providing free healthcare services, education, and training for vulnerable and underserved populations.
Raising Hope International Friends
RHIF strives to create a world where every person with sickle cell disease can thrive, accessing quality healthcare, support, and opportunities to live their lives to the fullest.
SICKLE CELL ASSOCIATION OF TEXAS MARC THOMAS FOUNDATION
To enhance and improve the quality of life for individuals and families affected by sickle cell disease and sickle cell trait through case management, programming and supportive services.
Sickle Cell 101
To globally provide and improve education, research and awareness on sickle cell disease and sickle cell trait supporting key community stakeholders, especially patients, caregivers, healthcare providers, allies and the general public.
Sickle Cell Foundation of MN
To improve quality of life for individuals and communities affected by sickle cell disease
Sickle cell coalition of Maryland
Our mission is to equip and support sickle cell warriors and their families, we strive to provide SCD Warriors with the tools needed to maximize access to equitable care, education, and resources. We will cultivate meaningful relationships within in order to build trust.
TANZANIA SICKLECELL WARRIORS ORGANIZATION (TASIWA)
TANZANIA SICKLECELL WARRIORS ORGANISATION abbreviated as TASIWA, is Tanzanian non governmental and non profit organization which aims at improving the survival rates of sickle cell-born children by promoting better handling and management of sickle cell disease through various programs including education and advocacy which mostly done at the community level.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.