by Patricia Wilson-Smith | Dec 31, 2025 | Advocacy & Policy, Education, Medicine, Sickle Cell News
In late 2024, Pfizer withdrew voxelotor (Oxbryta) from the market globally after concluding the risks outweighed the benefits. ASH Research Collaborative+1That decision hit patients and clinicians hard—because many people had built their routine around it. New...
by Patricia Wilson-Smith | Dec 31, 2025 | Sickle Cell News
If you’ve been following gene therapy for sickle cell disease (SCD), you’ve probably heard about Casgevy (exa-cel)—a CRISPR-based gene-editing therapy currently approved for some patients ages 12+. In early December 2025, Vertex reported that children ages 5–11 in a...
by Patricia Wilson-Smith | Dec 31, 2025 | Stories
Stories are powerful. For families affected by sickle cell disease, sharing lived experiences helps break isolation, challenge stigma, and build community. Many individuals with sickle cell feel unseen or misunderstood. Pain is often invisible, and misconceptions...
by Patricia Wilson-Smith | Dec 31, 2025 | Stories
Raising a child with sickle cell disease requires extraordinary strength, patience, and love. Parents and caregivers must balance everyday childhood experiences with the realities of a chronic, unpredictable illness. From early childhood, families learn to monitor...
by Patricia Wilson-Smith | Dec 31, 2025 | Stories
Advocacy is not optional for families living with sickle cell—it is essential. Despite being one of the most common genetic blood disorders, sickle cell disease has historically been underfunded, misunderstood, and overlooked in healthcare systems nationwide,...
