Zahara & Kesha Weeks

The Community Input Panel was launched in 2020 to help support two-way dialogue between the Initiative and the patient community.

About the Community Input Panel (CIP)

The Cure Sickle Cell Initiative (CureSCI) is a collaborative, patient-focused research effort designed to find safe and effective genetic-based cures for sickle cell disease. An important part of CureSCi is the inclusion and active participation of people living with SCD who help to guide research, as well as education and engagement efforts. The CIP provides input on the direction of the Initiative, and members engage in conversations with leadership to help communicate needs and identify opportunities in genetic therapies for SCD.

Recent Activities

The CIP meets regularly to share input on the overall direction of CureSCi and to discuss activities that are being developed and implemented, including:

  • Initiative events
  • Educational materials
  • Outreach materials
  • Clinical trials plans

The CureSCi Patient Engagement Journey document details the involvement of those living with sickle cell disease from before the launch of the Initiative to today.

Members

CIP members are diverse in their representation including race, gender, age, geographic location, and their experiences. They are selected based on their knowledge and ability to represent the needs of the sickle cell patient and caregiver community. Members are engaged, involved, and offer a diversity of opinion and expertise.

Current Members