• Statement on the Inclusion of DEI in Medical School Curriculum
    by Emma Day on May 14, 2024 at 9:24 pm

    SCDAA joins the National Medical Association, the American Medical Association, the American Association of Medical Colleges, and other groups, in advocating for DEI programs in medical institutions. Sickle cell disease (SCD) is a serious and complex disease that affects a disproportionate amount of people of color in the United States. As such, it exists in The post Statement on the Inclusion of DEI in Medical School Curriculum appeared first on Sickle Cell Disease Association of America Inc..

  • In Memory of Monica Rockwell
    by Emma Day on April 24, 2024 at 7:47 pm

    It is with great sadness that SCDAA shares the news of the passing of Monica Rockwell, executive director of SWGA Sickle Cell Awareness, on April 10, 2024. Monica was a tireless advocate and dedicated community health worker. She was a steadfast supporter of SCDAA’s education and outreach efforts and worked with Kevin Amado, our Senior The post In Memory of Monica Rockwell appeared first on Sickle Cell Disease Association of America Inc..

  • SCDAA promotes Kevin Amado Jr.
    by Emma Day on March 26, 2024 at 8:48 pm

    The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, promoted Kevin Amado Jr. to senior community impact and education manager. Amado joined the association in 2020 and brings 20 years of experience as a health educator, case manager, community health worker and The post SCDAA promotes Kevin Amado Jr. appeared first on Sickle Cell Disease Association of America Inc..

  • The Nod to “Naz” Exhibit
    by Emma Day on March 7, 2024 at 10:21 pm

    During our 50th Annual National Convention in 2023, SCDAA was proud to exhibit the artwork of Hertz Nazaire at a pop-up exhibit. Known for his advocacy work and “Finding Your Colors” adult coloring book series, Hertz created mixed-media visual art reflective of his personal experiences with pain and sickle cell disease. He died of sickle The post The Nod to “Naz” Exhibit appeared first on Sickle Cell Disease Association of America Inc..

  • CMO Speaks: Cyberattacks on Health Care Companies
    by Emma Day on March 5, 2024 at 9:35 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, with gratitude for input from many sickle cell warriors. Sickle Cell Warriors Get Hurt When Cyberattacks Hit Large Health Care Companies A national cybersecurity incident recently caused certain pharmacy The post CMO Speaks: Cyberattacks on Health Care Companies appeared first on Sickle Cell Disease Association of America Inc..

  • SCDAA Joins the IGT Patient Advocacy Advisory Council
    by Emma Day on March 4, 2024 at 7:12 pm

    SCDAA is pleased to announce that we have joined the Insitute for Gene Therapies (IGT) Patient Advocacy Advisory Council. IGT advocates for a modernized regulatory and reimbursement framework that encourages the development of transformative gene therapies and promotes patient access. SCDAA is proud to support this mission as an advisory council member. Learn more about The post SCDAA Joins the IGT Patient Advocacy Advisory Council appeared first on Sickle Cell Disease Association of America Inc..

  • 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..