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 gene 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
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
CIP Member Spotlight
Titilope A. Fasipe, MD, PhD
Why is the Community Input Panel such an important component of the Cure Sickle Cell Initiative?
It is important to include members of the sickle cell community when it comes to input on research, emerging therapies, and clinical care; following the motto: "nothing for us, without us."
What does a cure look like?
A cure for sickle cell would... be an answered prayer. A prayer that is asking for a definitive end to pain and suffering for millions affected worldwide.
