Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This is part two of a three-part series on gene therapy for sickle cell disease. Part two was written by Dr. Lewis Hsu. What comes up for you when you hear the words “gene therapy?” If it makes you feel overwhelmed, skeptical and/or confused, you’re not alone. There are a lot.....

Hematopoietic stem cell transplant for sickle cell disease from HLA-matched sibling donor (MSD) after myeloablative conditioning has been proven as curative therapy for sickle cell disease for over 25 years. It is no longer considered an experimental procedure. Over 2,000 transplants have been performed successfully across the world from HLA-matched sibling donors. Pooled Overall Survival rates for children and adults are high at 97% and.....

Sept. 16, 2023 – The worldwide pandemic of COVID-19 (SARS-CoV2) infections seem to have settled down, and we are now seeing waves of infections with new variants. As facemasks come off and isolation rules end, everybody has higher chances of catching other respiratory infections, such as RSV (respiratory syncytial virus) and influenza (flu). SCDAA’s Medical and Research Advisory Committee (MARAC) endorses a shared-decision-making process about.....

HANOVER, MD – Sickle Cell Disease Association of America (SCDAA), the leading national organization and voice for people with sickle cell disease (SCD), today launched a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease (SCD). Acute pain episodes known as sickle cell crises are one of the most common and debilitating symptoms of SCD. These.....

All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the list below to find an event near you......

This morning, we were notified that some users experienced issues using our 2023 National Abstract Competition portal. This issue has been remedied. SCDAA is accepting abstract submissions until 11:59 p.m. PST, July 17, 2023. If you tried to submit an abstract earlier today and encountered a problem, please click here to resubmit your work before the deadline. Thank you for your patience......

July 7, 2023 – SCDAA’s Medical and Research Advisory Committee (MARAC) notes that the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) recommended on May 26, 2023, that the conditional marketing authorization for crizanlizumab (Adakveo) be revoked. The EMA stated that this revocation was triggered by the findings of the Novartis STAND multinational clinical trial showing no significant benefit of crizanlizumab.....

The Sickle Cell Disease Association of America, the leading patient organization for people with sickle cell disease, announced a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease. More than 100,000 Americans live with sickle cell disease, a genetic blood disorder that affects red blood cells. Acute pain episodes known as sickle cell crises are one.....

Dublin, Ireland, 19 June 2023: Afimmune, a clinical stage biopharmaceutical company developing novel rare disease therapeutics, today announced it has been invited to join the Sickle Cell Disease Association of America’s (SCDAA) Collaboration of Advocates for Research, Education and Science (C.A.R.E.S.) Consortium. The mission of this initiative is to raise awareness about the importance of clinical trials and why it can help sickle cell patients.....