Newly developed tour of schools, libraries, fairs and festivals, etc. to promote sickle cell education,
An initiative created to provide training and promote the creative works of sickle cell patients
2018 Prioritization to increase research and patient best practices for the aging sickle cell population.
4-5 day annual Convention created for and by sickle cell patients and caregivers.
Annual Summit of Consortium partners providing advocacy training, CBO best practices workshops and lectures, the
A series of educational materials developed by patients and caregivers, with medical/research advisory board review.
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.
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.
Launched as part of PCOI to increase minority participation and education in clinical trials.
Developed to directly involve sickle cell patients and caregivers in identifying the research topics, study