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patient education

State of sickle cell disease – 2018 report card

key information

source: Sickle cell disease coalition

year: 2018

summary/abstract:

Sickle cell disease (SCD) — an inherited disorder that causes a person’s red blood cells to become deformed and get stuck in veins, blocking oxygen flow throughout the body — can cause severe pain, stroke, organ failure, and even death. There is no widely available cure for SCD, and care is inconsistent in the United States and wholly absent in large parts of the world.

To highlight the urgent need for change, in 2016 the American Society of Hematology (ASH) issued a report and report card on the state of SCD based on a survey of individuals with SCD, health care providers, and global health leaders.

Two years later, SCD stakeholder groups have conducted a follow-up survey to measure progress. The good news is that this 2018 report card suggests we are making progress; however, the scores also indicate that we have much to do to improve the state of care for those living with SCD.

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