News

Researchers have found that a new dosing regimen of the drug hydroxyurea results in levels of fetal hemoglobin above 20 percent in sickle cell anemia patients, and reduces hospitalizations by at least two-fold. Hydroxyurea has been shown to be of clinical benefit to children with sickle cell anemia (SCA) and is…

Vertex Pharmaceuticals and CRISPR Therapeutics recently announced a joint collaboration to co-develop and co-commercialize CTX001 as a gene-editing treatment of diseases of hemoglobin, including β-thalassemia and sickle cell disease (SCD). The announcement follows the presentation of preclinical data for CTX001 at the American Society of Hematology…

A new online platform, called oneSCDvoice.com, will help those affected by sickle cell disease (SCD) by offering free access to comprehensive support and a robust knowledge network . rareLife solutions, the health tech, design and research team behind oneSCDvoice and other custom rare disease platforms, will launch the modular community…

Following a review of studies published in the last decade, experts have updated their recommendations for managing a sickle cell disease-related eye complication known as sickle cell retinopathy (SCR). Their paper, “Sickle cell retinopathy: improving care with a multidisciplinary approach,” appeared in the Journal of Multidisciplinary Healthcare. SCR, a…

An independent review board has found Global Blood Therapeutics’ sickle cell disease treatment voxelotor safe, and recommended that its Phase 3 clinical trial continue. The hallmark of sickle cell disease is damage to a red blood cell protein called hemoglobin that carries oxygen to organs and tissue. The damage causes the cells…

The National Organization for Rare Disorders (NORD) says it’s “disappointed and dismayed” after the House of Representatives voted 227-205 last week to repeal the Orphan Drug Tax Credit as part of a U.S. tax reform package. A similar package before the Senate Finance Committee does not repeal the credit…