Carol Ossai is the Founder and Chief Executive Officer of Sickle cell and Young Stroke Survivors UK, a charity founded from her personal experience of caring for her son when he had his first stroke at the age of 6 years and many more after that. She is a passionate advocate, expert patient/parent, public speaker and a EUPATI Fellow with keen interest in the research and development of drugs for rare diseases.
Carol works with researchers to ensure patient public involvement. She is also a protocol reviewer and works with Pharma on patient information, recruitment, engagement and dissemination. A
Carol also reads protocols for Clinical trials and is a selected reviewer with the European Medicines Agency and a member of the Innovative Medicines Initiative (IMI) pool of expert patients.
She has attended global, regional and local meetings and conferences to address concerns about the health of young people living with sickle cell and how to address medication efficacy.
Currently, Carol is working on the First Sickle cell in Africa Patient/Parent Network Conference AKA SCAPPN2020 to be held in Uganda as part of Sickle Cell and Young Stroke Survivors 15th Anniversary.
Terms on our board