The Foundation for Sickle Cell Disease Research (FSCDR) is the United States’ first outpatient center exclusively dedicated to the treatment of and innovative research for SCD. The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease to help maximize quality of life and improve survival for the generations of people affected with
this disease. FSCDR is a comprehensive, non-profit organization that provides a platform for researchers, healthcare providers, individuals and their families living with sickle cell disease and supporters to work collaboratively in identifying barriers that are limiting creation, adoption and adherence to evidence-based screening recommendations, new therapeutics and best practices that help in the management of sickle cell disease. FSCDR understands that research must be supported with data and that education plays a key role in empowering people and affecting change; therefore, its venues directly promote these principles. As part of its extensive platform, FSCDR offers educational initiatives that help to expand the understanding of sickle cell disease through its Annual Sickle Cell Disease Research Meeting and its scholarly Journal of Sickle Cell Disease and Hemoglobinopathies. FSCDR also provides networking that facilitate collaborative learning through its membership-based Sickle Cell Research Society of America (SCRSA) and its general Corporate Engagement Forum, which also invites patient participation. Most importantly, FSCDR has created the first-ever Sickle Cell Disease and Thalassemia Patient Registry that allows researchers access to vital information for data mining, qualitative and quantitative research that can help pave the way toward a better understanding of sickle cell disease and innovations in the treatment of sickle cell disease and related disorders. The Registry also has a health record portal for individuals with sickle cell disease to keep track of their health information, receive reminder notifications, and share their health record with their doctor (s). FSDCR appreciates the benefits of being united in the common cause of sickle cell disease research and medical care with academia, pharmaceutical, biotechnology, and community organizations.
