By Tosin Ola, RN, BSN, MBA-HCM, Founder & President, Sickle Cell Warriors Foundation. The U.S. Food and Drug Administration’s decision on mitapivat, a pill for sickle cell disease, is due November 1, 2026. Mitapivat is not a cure. In Phase 3 trials, however, it raised hemoglobin levels — and for people living crisis to crisis,
Mitapivat Decision Due November 1: A Pill, Not a Cure — But a Step Forward Read More »
By Tosin Ola, RN, BSN, MBA-HCM, Founder & President, Sickle Cell Warriors Foundation. A study from Conakry, Guinea, has found hydroxyurea linked to fewer sickle cell crises — welcome evidence from a region where sickle cell disease affects so many families, and where access to treatment is often limited. The study followed 102 patients and
Hydroxyurea Linked to Fewer Crises in Guinea: What a 102-Patient Study Shows Read More »
By Tosin Ola, RN, BSN, MBA-HCM, Founder & President, Sickle Cell Warriors Foundation. Aisha has become the first patient in the United Kingdom to complete gene-editing therapy for sickle cell disease — and is now living without sickle cell crises. This milestone, reported by Manchester University NHS Foundation Trust, matters far beyond one hospital. For
A First in the UK: A Patient Completes Gene-Editing Therapy for Sickle Cell Disease Read More »
Sickle Cell Warriors Inc. Presents The Impact of Sickle Cell Disease on Your Hearing and Balance -The association between hearing loss/dizziness and SCD -Recent national changes to hearing health care for those with SCD -Treatment options and next steps -Research update đź“… Thursday, March 19 đź•’ 3:00 PM Pacific | 6:00 PM Eastern đź’» Virtual
The Impact of Sickle Cell Disease on your Hearing and Balance Read More »
Connect with over 25,000 patients and we are still growing! Sickle Cell Warriors is the largest patient-run global advocacy organization for sickle cell disease. Connect with us today!
Connect with SCW today Read More »
WEBINAR SERIES Sickle Cell Science: Path to Progress To commemorate Sickle Cell Awareness Month 2019, this September the National Heart, Lung, and Blood Institute (NHLBI) and partner agencies and institutions will host Sickle Cell Science: Path to Progress, a four-part webinar series that will discuss genetic therapies, progress in pain management, bone marrow transplants and other therapies, and
WEBINAR SERIES Sickle Cell Science: Path to Progress Read More »
June 25, 2019 6:00 – 7:00 p.m. Eastern time This webinar will provide information on hydroxyurea, share a story from an individual who has taken hydroxyurea, and feature sickle cell disease experts who will answer questions the audience may have. The webinar will focus on the use of hydroxyurea in young adults and adults. Register
FREE Webinar: Hydroxyurea for SCD Read More »
What is this? The American Society of Gene & Cell Therapy (ASGCT) is proud to announce the first release of the Society’s Patient Education program, a new initiative for 2019. The new patient-centered portal is designed by ASGCT committee volunteers in coordination with patient advocacy groups to educate and inform patients, families, and the general
ASGCT Patient Education on Blood Disorders Read More »
Holistic Health and Sickle Cell Disease: A focus on Mental and Behavioral Health Thursday, February 28, 2019 1:00 – 2:15 pm EST Register Here Sickle cell disease (SCD) affects millions globally, disproportionately impacting certain racial and ethnic minority populations, including African Americans, Latinos and people of Middle Eastern, Indian, Asian and Mediterranean descent. According to
Holistic Health and Sickle Cell Disease Webinar Read More »
Tracing sickle cell back to one child, 7,300 years ago Check out this amazing article by Nalina Eggert of BBC News for a journey of SCD from 7,300 years ago. The article contains videos and text that will provide a new perspective for how SCD developed and continues to influence the lives of people who suffer
Tracing sickle cell back to one child, 7,300 years ago Read More »
