Our vision is a day when every individual with Sickle Cell Disease in the United States lives to his or her fullest potential because the individual has timely, sustained access to high-quality, equitable, coordinated care and treatment.

Who We Are

The Sickle Cell Disease Partnership is a multi-sector collaboration of health care stakeholders committed to advancing actionable federal health care policies that will improve the lives of patients living with Sickle Cell Disease.

For far too long, people have suffered stigmatization and daily pain from this disease. Together, we can modernize sickle cell disease treatment and help people live better lives.

Dr. Brett Giroir
Senior Advisor, Sickle Cell Disease Partnership

Our Work

The Sickle Cell Disease Partnership’s work is rooted in the 2020 report from The National Academies of Science, Engineering, and Medicine’s (National Academies), “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.” The Partnership’s main objective is to work collaboratively across the Sickle Cell Disease community to translate the recommendations of the National Academies’ foundational report into legislative and administrative actions in Congress and the Executive Branch.

Our Members

The Partnership is composed of Sickle Cell Disease patient and community organizations, health care providers who have experience caring for Sickle Cell patients, manufacturers of medical products, health plans, researchers, and others interested in improving the lives of patients living with Sickle Cell Disease. 

Our Focus Areas

Access to New Therapies

Committed to achieving policy objectives that promote timely, quality and equitable access to treatments and therapies.

Care Delivery and Access

Dedicated to ensuring timely, sustained access to high-quality, equitable, coordinated and comprehensive primary, subspecialty and psychosocial care.

Data and Evidence

Focused on achieving policy objectives that break down existing barriers and promote the collection and standardization of reliable, high-utility data on those living with Sickle Cell.