The S 735 bill, aimed at enhancing research, surveillance, prevention, and treatment for sickle cell disease and other heritable blood disorders, has been introduced and referred to the Committee on Health, Education, Labor, and Pensions. This legislative move could impact funding and focus on these conditions.

The House has introduced HR 1796, aimed at enhancing research, surveillance, prevention, and treatment for sickle cell disease and other heritable blood disorders. The bill has been referred to the House Committee on Energy and Commerce for further consideration.

The Federal Register has published updates regarding the Sickle Cell Advisory Committee, including amendments and renewals. This committee plays a crucial role in advising on policies related to sickle cell disease.

NHS Scotland has approved Exagamglogene autotemcel, a CRISPR gene therapy for severe sickle cell disease, promising durable reduction in vaso-occlusive crises. This approval is contingent on a Patient Access Scheme, allowing for confidential pricing arrangements for this high-cost therapy.

The CDC's new study provides the first national estimate on the health status of children with sickle cell disease, highlighting that black children with the condition face higher risks of intellectual disabilities, hearing deficits, and severe headaches compared to their peers without the disease. This data underscores the need for targeted interventions and support.