National Awareness Tour
Newly developed tour of schools, libraries, fairs and festivals, etc. to promote sickle cell education,
Creative Content
An initiative created to provide training and promote the creative works of sickle cell patients
Aging Well with Sickle Cell
2018 Prioritization to increase research and patient best practices for the aging sickle cell population.
Annual Sickle Cell Warriors Convention
4-5 day annual Convention created for and by sickle cell patients and caregivers.
Annual Leadership Summit & General Assembly of Patient, Caregivers and CBOs
Annual Summit of Consortium partners providing advocacy training, CBO best practices workshops and lectures, the
Patient-Powered Educational Literature Series
A series of educational materials developed by patients and caregivers, with medical/research advisory board review.
Warrior University
An in-person and online webinar series providing curriculum-based education on a wide variety of topics, including community-based organization best practices and expert patient education.
COMPASS
Community Participation to Advance the Sickle Cell Story. Created to guide the direction of sickle cell research by capturing the patient voice to determine patient priorities for research. Funded by PCORI, this project will bridge the gap between research, practice, and true outcomes for those living with sickle cell disease.
Clinical Trials Initiative
Launched as part of PCOI to increase minority participation and education in clinical trials.
Patient-Centered Outcomes Initiative (PCOI)
Developed to directly involve sickle cell patients and caregivers in identifying the research topics, study