About this project
This project created patient-focused education materials for the sickle cell community. It is important that for patients and families who are considering gene therapy to understand the benefits and limitations of treatments so that they can make an informed decision on the therapies. Patients need accessible, understandable, and actionable educational materials to help them make such decisions.
To help navigate these new therapies, more than 50 scientists, physicians, patients and other experts worked together to develop content for the Democratizing Education for Sickle Cell Disease Gene Therapy Project, which is led by NHGRI in partnership with other organizations and individuals.