The Patient Action Committee was founded by individuals living with sickle cell disease at Brown Health who believed their voices deserved to be heard. Motivated by shared experiences and a desire for better care, these patients came together to advocate for meaningful improvements within healthcare systems that were not fully meeting their needs.

​

With the support and partnership of physicians and hospital leadership, patients helped lead efforts that drove important changes — particularly within the emergency room setting. By sharing their lived experiences, they played a critical role in educating doctors and nurses, strengthening awareness, and promoting more compassionate, informed approaches to care.

​

Today, the Patient Action Committee stands as a powerful example of what is possible when patients are empowered to lead. Their work continues to influence how care is delivered, foster stronger collaboration between patients and providers, and advance a healthcare environment that is more responsive to the sickle cell community.

​

If you are passionate about improving the sickle cell experience, we invite you to be part of this important work. The Patient Action Committee welcomes not only patients, but also caregivers, family members, and individuals with sickle cell trait who want to lend their voice, share their perspective, and help drive lasting change across Rhode Island. Together, we are building a stronger, more informed community — and your voice belongs at the table.