Advocacy Arena
A leading nonprofit voice in the U.S. for sickle cell issues, connecting regional chapters, healthcare providers, and patients.
Sickle Cell Disease Association of America (SCDAA)
The most common and severe form of sickle cell disease
HbSS
The shift from pediatric to adult care
Transition of Care
CDC
Provides data, funding and educational tools on SCD in the US, including for newborn screening programs
Center for Disease Control (CDC)
A medication used to reduce the frequency of pain crises and the need for blood transfusions
Hydroxyurea
An organizing entity providing the framework for the stakeholders to apply a model of Collective Impact to define problems and gaps in the sickle cell community.
SICKLE CELL COMMUNITY CONSORTIUM (SC3)
HbSC
Mandatory testing in the US to detect SCD in newborns for early intervention (as well as other conditions)
Newborn screening
NHLBI
Part of NIH; Funds research and provides clinical guidelines for treating SCD
National Heart, Lung, and Blood Institute (NHLBI)
A recalled, FDA-approved drug that improved hemoglobin levels by reducing sickling of red blood cells
Voxelotor (Oxbryta)
+ 100 for manufacturer
An organization elevating the voices of the sickle cell disease (SCD) community by telling their stories of resilience.
Sick Cells
Inheriting one sickle gene and one normal gene
Sickle Cell Trait (SCT)
Life-threatening complication of SCD involving chest pain, cough, and difficulty breathing
Acute Chest
ASH
Publishes treatment guidelines and supports research and education on blood disorders
American Society of Hematology (ASH)
First CRISPR-based gene editing therapy approved in the US for SCD
Casgevy
+ 100 for manufacturer
Massachusetts-based CBO founded to ensure that individuals living with sickle cell disease are treated with dignity and compassion through advocacy, education, and services.
Massachusetts Sickle Cell Association (MSCA)
Greater Boston Sickle Cell Disease Association (GBSCDA)
Autosomal Recessive
A sudden, severe pooling of blood in the spleen; especially dangerous in young children
Splenic Sequestration
HRSA
Supports care coordination and funding for sickle cell services, especially for underserved communities
Health Resources and Services Administration (HRSA)
Lentiviral vector gene therapy also approved for SCD (similar stem cell-based approach to produce anti-sickling Hb)
Lyfgenia (Lovo-cel)
+100 for company
The largest and most comprehensive digital platform for information dissemination and real-time generated community insights from the sickle cell community.
Sickle Cell 101
Genetic testing to determine if someone carries the sickle cell gene
Carrier Screening
A hallmark of SCD involving episodes of severe pain caused by blocked blood flow
Vaso-Occlusive Crisis (VOC)
CMMI
The CMS Innovation Center develops and tests health care payment and service delivery models to improve patient care, lower costs, and align payment systems.
Center for Medicare and Medicaid Innovation (CMMI)
A medical procedure that replaces a patient's faulty blood-forming stem cells with health ones - usually from a matched sibling donor
Stem Cell Transplant