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.


  • Has experience of working at a global level with international experts and professionals on concerns about the health of young people living with sickle cell and how to address medication efficacy.
  • Has led a process of achieving clinical pathways for early stroke detection for childhood stroke to ensure that Trans Cranial Doppler scans where offered yearly to children and young people.
  • Developing clinical pathways for childhood stroke in the UK, as well as producing a parent’s booklet to help parents navigate the stroke maze.
  • Carol has set up and ran a Sickle cell centre for 5 years in Nigeria 
  • She is also the founder of Sickle cell in Africa Patient Parent Network (SCAPPN) a network of Patients and parents of grassroots patient-led community groups and NGO’s in Africa.
  • Carol is one of the founding members of the Global Sickle cell Disease Association for sickle cell patients and works across the 5 continents.
  • Published extensively in peer reviewed journals 
  • Developed many guidelines on sickle cell disease clinical care practice and standards

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.
When she is not glued to Sickle cell work, Carol likes to read, travel and go dancing.

Terms on our board

  • 1st term (2019-2021)