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 May 2024
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.
FOCUS ON SICKLE CELL AFRICA
To raise awareness, provide education, support research efforts, improve access to healthcare services, and advocate for policies that enhance the quality of life for individuals living with sickle cell disease in Uganda . This mission encompasses a holistic approach that addresses various aspects of the disease, including medical care, social support, and community engagement.
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.
Life and Family Foundation, VA
Helping individuals affected by sickle cell livevthrough advocacy, education, and empowerment.
Pathways To Trust
To elevate the patient's voice to increase access to care and eliminate bias by bringing stakeholders together.
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.
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 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.
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 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
Sickle Cell Support Hub
To create a holistic ecosystem of support for sickle cell affected people, and implement sustainable social development programs to uplift the marginalized community.
Umoja Africa Sickle Cell Foundation
Umoja Sickle Cell Foundation is a group of African Sickle Cell nonprofit organizations with the aim of representing patients, caregivers and all stakeholders as well as advancing the rights of those affected by sickle cell disease. Our mission is to synergize the efforts of sickle cell disease organizations in Africa to promote Advocacy, Awareness, Care and Research.
Clinical Trials
For a list of clinical trials in this disease area, please click here.