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Proposed Legislation Concerning Student Sickle Cell Disease Management Programs in Public and Nonpublic Schools

Exciting News!  Senate Bill 161 was introduced on January 15, 2018.  If passed, the Bill will help build the foundation for new guidelines to be developed regarding the administration of health care services to students with Sickle Cell Disease, attending public and nonpublic schools, in the State of Maryland. Read the entire Bill here  

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Sickle Cell Patients, Families And Doctors Face A ‘Fight For Everything’ by Jenny Gold

“CHICAGO — The day before his 30th birthday, Marqus Valentine was in a panic. “I was so scared for midnight to come rolling around because subconsciously I was like, ‘This is it. Tomorrow’s my last day on Earth,’” he said. “Valentine has sickle cell disease, an inherited blood disorder, and his doctors had warned him

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Breaking News

FDA Approves First Gene Therapies to Treat Patients with Sickle Cell Disease

On December 8, 2023, “The U.S. Food and Drug Administration approved two milestone treatments, Casgevy and Lyfgenia, representing the first cell-based gene therapies for the treatment of sickle cell disease (SCD) in patients 12 years and older. Additionally, one of these therapies, Casgevy, is the first FDA-approved treatment to utilize a type of novel genome editing technology, signaling an innovative advancement in the field of gene therapy."