This week, two new publications call attention to the barriers to care children with SCD face. Prioritizing Sickle Cell Disease, an article co-authored by SCDAA Chief Medical Officer Lewis Hsu for the American Academy of Pediatrics, is a call to action within the medical community to work together to maximize available screenings and treatments. The Centers for
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August is National Immunization Awareness Month. What does that mean for individuals with sickle cell disease (SCD)? The Big Picture from SCDAA MARAC Individuals with sickle cell disease are more likely to have complications from many infections and receive a lot of benefit from immunizations. Family members can help protect a child or adult with
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September is Sickle Cell Awareness Month. Check out these helpful tools and learn more about how to support sickle cell warriors! For Schools https://www.chop.edu/health-resources/sickle-cell-school-outreach For Employers https://askjan.org/disabilities/Sickle-Cell-Anemia.cfm https://askjan.org/publications/Disability-Downloads.cfm?pubid=969229&action=download&pubtype=pdf For Emergency Medicine https://www.acep.org/patient-care/sickle-cell/ For Hospitalists https://www.hospitalmedicine.org/clinical-topics/sickle-cell-disease/Sickle-Cell-Implementation-Form/ For Blood Transfusion https://www.cdc.gov/ncbddd/sicklecell/betterhealthtoolkit/blood-transfusions.html About Sickle Cell Trait https://www.cdc.gov/ncbddd/sicklecell/toolkit.html For Advocacy https://www.nationalacademies.org/news/2020/09/improving-health-outcomes-for-sickle-cell-disease-care-requires-comprehensive-team-based-care-new-payment-models-and-addressing-institutional-racism-in-health https://nichq.org/campaign/national-sickle-cell-awareness-month-2022 Looking for more? Visit oneSCDvoice’s Sickle Cell
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Join an SCDAA member organization at one of these great events this September! The Amazing Race 5K/1K | Starts September 1 | Virtual Hosted by Sickle Cell Houston Virtual Walk Across Texas | September 3 | Virtual Hosted by the Sickle Cell Association of Texas Marc Thomas Foundation National Sickle Cell Month Press Conference | September 6 |
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Dear Sickle Cell Community, Over the past several months, SCDAA has been working with congressional sickle cell disease (SCD) champions and other community and provider groups to advance bipartisan legislation to improve care for individuals with SCD. The Sickle Cell Disease Comprehensive Care Act (H.R. 6216 / S. 3389) authorizes the Centers for Medicare and
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SCDAA regrets to announce that Dr. Samir Ballas passed away on August 12. He was devoted to caring for adults with sickle cell in Philadelphia at Thomas Jefferson University. He made many significant contributions to clinical research on sickle cell pain and lab research on sickle cell shape changes. Read the letter from his daughter
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July 20 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of the news about monkeypox and is monitoring the situation. Please follow advisories from organizations such as the Centers for Disease Control and Prevention to avoid close, skin-to-skin contact with individuals who have a rash that looks
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Dr. Kwaku Ohene-Frempong, a visionary sickle cell doctor and advocate, passed away on May 7, 2022, at 76. A memorial service to honor his life has been planned for Saturday, June 25, in Accra, Ghana. The memorial will be livestreamed for the hundreds of community members who will be unable to attend the live event
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Ahead of World Sickle Cell Awareness Day on June 19, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.) introduced the Sickle Cell Care Expansion Act to improve access to medical treatment and quality of life for people suffering from Sickle Cell Disease (SCD). This bill, which complements legislation introduced earlier this year by
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Partnership Calls on Policymakers to Implement Proposals in 2020 Landmark Report Today, in recognition of World Sickle Cell Day on June 19th, the Sickle Cell Disease Association of America announced it has joined the newly formed Sickle Cell Disease Partnership. The Partnership is comprised of 15 organizations representing a diverse cross-section of patient advocates, health care providers,
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