Sickle cell anemia
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 September 2023.
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
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.
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.
Sickle Cell Foundation of MN
To improve quality of life for individuals and communities affected by sickle cell disease
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.
Petronille Healthy Society
Petronille Healthy Society is committed to providing free healthcare services, education, and training to communities in need, especially the most vulnerable and underserved populations.
Alaafia Women
This community raises awareness to prevent Sickle Cell disease from spreading to the next generation.
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
Life and Family Foundation, VA
Helping individuals affected by sickle cell livevthrough advocacy, education, and empowerment.
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.
Alaafia Women’s Corporation
Alaafia provides Digital Career Training for Sickle Cell Families. This project is tailored to assist not only individuals living with sickle cell but to the families of those living with sickle cell. Alaafia provides domestic and sexual violence services and resources specifically tailored to individuals with sickle cell disease. Sickle Cell Educational Prevention, treatments and cure.
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.
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.
Pathways To Trust
To elevate the patient's voice to increase access to care and eliminate bias by bringing stakeholders together.
#ThroughThePain Inc.
#ThroughThePain Inc. is a 501 (C) (3) ORGANIZATION that provides patient-centered services for Sickle Cell Warriors and caregivers.
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
SICKLE CELL AWARENESS FOUNDATION CORP INT
To expand the genetic condition of sickle cell disease. To advocate for improved treatment services and accessibility to these services. To inform what parents, family members and the community can do to impact this disease condition. We seek to inspire progress for a much-needed cure for this disease.
Supporters of Families with Sickle Cell Disease, Inc
Our mission is to increase self-efficacy and improve the overall quality of life for individuals living with sickle cell and thalassemia, children, adults and their families within Oklahoma through systemic changes in patient care, disability policies, education, family support, economic self-sufficiency, awareness and advocacy.
Uriel E. Owens Sickle Cell Disease Association of the Midwest
The mission of the Uriel E. Owens Sickle Cell Disease Association of the Midwest is to provide information and awareness about Sickle Cell Disease, to advocate for the needs of persons with Sickle Cell, and support research to find a cure. Besides education and awareness, the Association provides emergency financial assistance, referral services, state and national advocacy, and educational scholarships for sickle cell patients.
Clinical Trials
For a list of clinical trials in this disease area, please click here.