Sickle Cell Disease (SCD) is a rare genetic disorder that largely affects African, Caribbean, Hispanic, Middle Eastern, Indian and Mediterranean communities.1 Around 20 million people live with it, while around 300,000 kids are born with SCD every year.2,3
It is most prevalent in sub-Saharan Africa, but around 100,000 people in the United States live with it.3
Sickle Cell Disease (SCD) is a debilitating, deadly inherited hematological disease.6
Hemoglobin is a protein in red blood cells that is used to carry oxygen around the body. In SCD, abnormal hemoglobin causes the red blood cells to become rigid, sticky and half-moon or "sickle" shaped. The change in shape makes the red blood cells prone to getting stuck in the bloodstream.7
This is why people living with SCD experience vaso-occlusive crises episodes, severe pain, multi-organ damage, stroke, frequent infections, and early mortality. The disease also leads to a shortened life span for red blood cells.7 While many living with this condition are focused on pain management, severe fatigue is a common battle for people living with SCD.8,9
The major clinical complications can result in extremely poor quality of life for people living with SCD.9 There are still numerous challenges and unmet needs in SCD leading to poor patient outcomes.10
Challenges in the U.S. arise from significant educational and awareness needs coupled with few available cost–effective treatments and lack of funding across the board. These challenges are compounded by societal and self-stigma of underrepresented ethnic populations.11
Thinking beyond the science, we strive to change the outcomes for people living with SCD and provide innovative treatment options.
We are a sponsor of the Sickle Cell Disease Association of America (SCDAA) C.A.R.E.S. Consortium focused on raising awareness about the importance of clinical trials in advancing SCD treatments. Through this consortium, we aim to educate and encourage more trial participation and opportunities for treatment.
The Clinical Trial Finder, created with our company Forma
Therapeutics, helps people find SCD clinical trials. Participating in
trials assists research and provides early access to
treatments.
Find
a trial today.
The American Society of Hematology (ASH) is the world’s largest professional society of clinicians and scientists who are dedicated to conquering blood diseases. We are a proud sponsor for this organization.
1. CDC. Data and statistics on sickle cell disease. Sickle Cell Disease (SCD). Published May 22, 2024. Accessed June 21, 2024. https://www.cdc.gov/sickle-cell/data/index.html
2. National Heart, Lung and Blood Institute. Sickle Cell Disease - What Is Sickle Cell Disease? National Institutes of Health. Published April 22, 2024. Accessed August 1, 2024. https://www.nhlbi.nih.gov/health/sickle-cell-disease
3. Piel FB, Steinberg MH, Rees DC. Sickle Cell Disease. Longo DL, ed. N Engl J Med. 2017;376(16):1561-1573. doi:10.1056/NEJMra1510865
4. Sickle Cell Disease Association of America (SCDAA). Sickle cell disease: facts and stats. Published online September 2021. Accessed June 5, 2024. https://www.sicklecelldisease.org/wp-content/uploads/2021/08/SCDAA-September-Fact-Sheet-2021.pdf
5. Ferriero DM, Fullerton HJ, Bernard TJ, et al. Management of stroke in neonates and children: a scientific statement from the American Heart Association/American Stroke Association. Stroke. 2019;50(3):e51-e96. doi:10.1161/STR.0000000000000183
6. Saraf SL, Molokie RE, Nouraie M, et al. Differences in the clinical and genotypic presentation of sickle cell disease around the world. Paediatr Respir Rev. 2014;15(1):4-12. doi:10.1016/j.prrv.2013.11.003
7. Kanter J, Kruse-Jarres R. Management of sickle cell disease from childhood through adulthood. Blood Reviews. 2013;27(6):279-287. doi: 10.1016/j.blre.2013.09.001
8. Ahmadi M, Poormansouri S, Beiranvand S, Sedighie L. Predictors and correlates of fatigue in sickle cell disease patients. Int J Hematol Oncol Stem Cell Res. 2018;12(1):69-76.
9. Osunkwo I, Andemariam B, Minniti CP, et al. Impact of sickle cell disease on patientsʼ daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell World Assessment Survey (SWAY). Am J Hematol. 2021;96(4):404-417. doi:10.1002/ajh.26063
10. National Academies of Sciences E, Division H and M, Practice B on PH and PH, et al. Complications of sickle cell disease and current management approaches. In: Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. National Academies Press (US); 2020. Accessed June 22, 2024. https://www.ncbi.nlm.nih.gov/books/NBK566466/
11. Bulgin D, Tanabe P, Jenerette C. Stigma of sickle cell disease: a systematic review. Issues Ment Health Nurs. 2018;39(8):675-686. doi:10.1080/01612840.2018.1443530
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