• 15K in a Day for Rare Disease Day 2024
    by Emma Day on February 23, 2024 at 8:59 pm

    HELP US REACH OUR GOAL – DONATE TODAY Did you know that February 29 is Rare Disease Day? This important event is dedicated to raising awareness for patients, families and caregivers around the world affected by rare diseases like sickle cell disease. As Rare Disease Day approaches, the Sickle Cell Disease Association of America, Inc., The post 15K in a Day for Rare Disease Day 2024 appeared first on Sickle Cell Disease Association of America Inc..

  • CMMI Announces the Cell and Gene Therapy Access Model
    by Emma Day on January 30, 2024 at 9:22 pm

    Today, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model, a demonstration aimed at improving access to cell and gene therapy products in the Medicaid program. CMMI chose sickle cell disease (SCD) as the first indication for the model. The intent of the model The post CMMI Announces the Cell and Gene Therapy Access Model appeared first on Sickle Cell Disease Association of America Inc..

  • Sickle Cell Disease is Not a Joke
    by Emma Day on December 18, 2023 at 7:23 pm

    This weekend’s Saturday Night Live skit about the recent historic approvals of potentially curative gene therapies for sickle cell disease is distasteful at best and harmful at worst. Earlier this month, the Food and Drug Administration approved groundbreaking new treatments that could change the lives of thousands. SNL chose to cast a spotlight on this The post Sickle Cell Disease is Not a Joke appeared first on Sickle Cell Disease Association of America Inc..

  • Gene Therapy: What You Need to Know (Warrior FAQs)
    by Emma Day on December 8, 2023 at 11:18 pm

    Download and print this statement. Two gene therapies were recently approved by the Food and Drug Administration (FDA) to treat sickle cell disease: Casegevy from CRISPR/Vertex and Lyfgenia from bluebird bio. You probably have questions about these new treatment options. Read more below. Is gene therapy a cure for sickle cell disease? Gene therapy is The post Gene Therapy: What You Need to Know (Warrior FAQs) appeared first on Sickle Cell Disease Association of America Inc..

  • SCDAA Statement About Gene Therapy Approval
    by Emma Day on December 8, 2023 at 11:18 pm

    On Dec. 8, 2023, the Food and Drug Administration (FDA) approved two cell-based gene therapies for sickle cell disease (SCD), Casgevy from CRISPR/Vertex and Lyfgenia from bluebird bio. These are the first treatments of their kind available to individuals with SCD in the United States. SCDAA welcomes the approval of these potentially curative therapies which The post SCDAA Statement About Gene Therapy Approval appeared first on Sickle Cell Disease Association of America Inc..

  • Gene Therapy is Approved!
    by Emma Day on December 8, 2023 at 5:38 pm

    We are very excited to share that today, Dec. 8, the Food and Drug Administration approved two gene therapies to treat sickle cell disease! These potentially curative therapies are the first treatments of their kind available to individuals with SCD. We are heartened by this approval and are proud to support our community during this The post Gene Therapy is Approved! appeared first on Sickle Cell Disease Association of America Inc..

  • SCDAA Statement on Exa-cel Gene Therapy
    by Emma Day on October 26, 2023 at 6:58 pm

    On October 31, 2023, the Food and Drug Administration is poised to make a landmark decision about exagamglogene autotemcel (exa-cel) gene therapy for sickle cell disease. The Sickle Cell Disease Association of America holds the position that the approval of this therapy would be a major advance in the treatment of sickle cell disease; however, The post SCDAA Statement on Exa-cel Gene Therapy appeared first on Sickle Cell Disease Association of America Inc..

  • CDC SCD Pregnancy Fact Sheets
    by Emma Day on October 26, 2023 at 3:18 pm

    Learn more about how to stay healthy leading up to, during and after a pregnancy with these newly developed fact sheets from the Centers for Disease Control and Prevention (CDC), the Foundation for Women & Girls with Blood Disorders, the American Society of Hematology and the Sickle Cell Reproductive Health Education Directive. NOW IN SPANISH! The post CDC SCD Pregnancy Fact Sheets appeared first on Sickle Cell Disease Association of America Inc..

  • In Memory of Dr. Lennette Benjamin
    by Emma Day on October 25, 2023 at 7:58 pm

    The Sickle Cell Disease Association of America, Inc., (SCDAA) is saddened to hear the news of the passing of Dr. Lennette Benjamin. Dr. Benjamin was a trailblazing physician who made many outstanding contributions to the sickle cell community. She was one of the first to establish a “day hospital” as an alternative to the emergency The post In Memory of Dr. Lennette Benjamin appeared first on Sickle Cell Disease Association of America Inc..

  • CMO Speaks: Making ED Care Better for SCD – Progress in 2023
    by Emma Day on October 20, 2023 at 4:03 pm

    Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This article was written by Dr. Lewis Hsu, SCDAA’s chief medical officer. The Emergency Department is no one’s favorite place, but unfortunately individuals with sickle cell disease may pay it frequent visits for emergency care. Encountering problems in ED care is The post CMO Speaks: Making ED Care Better for SCD – Progress in 2023 appeared first on Sickle Cell Disease Association of America Inc..