Membership Notice: IAPO Board Member, Carol Ossai Passes Away

Tuesday, 21 April 2020

The Board and members are deeply saddened to announce that IAPO Board Member, Carol Ossai, passed away on Friday, April 10th, 2020.

Carol was a passionate advocate for the improvement of care and treatment for people living with Sickle Cell Disease (SCD) and had been an IAPO member since 2016. In November 2019, she joined the IAPO Board of Trustees after her election at the Asia Pacific Patients Congress.

She was the Founder and CEO of Sickle cell and Young Stroke Survivors UK, a charity founded in 1996 after her personal experience of caring for her son who was a young stroke survivor at the age of 6years. Carol dedicated her life to Sickle Cell Patient Advocacy leaving behind her career in Food and Consumer studies.

As a EUPATI fellow, Carol was an expert patient with a keen interest in the research and development of drugs for rare diseases. She was also a selected reviewer with the European Medicines Agency and a selected member of the Innovative Medicines Initiative (IMI) pool of expert patients.

Carol founded the Sickle Cell in Africa Patient Parent Network (SCAPPN)- a network of patients and parents directly affected by SCD that led grassroots initiatives in Africa. Up until her passing, she was working on the first ever SCAPPN Congress which was to be held in Uganda as part of their 15 year anniversary.

In 2019, Carol also became a founding member and was later elected as the interim chair for Global Alliance of Sickle Cell Disease Organizations (GASCDO), a recently initiated global sickle cell disease patient organization dedicated to inspiring hope and improving the quality of life of all people with SCD worldwide.

On behalf of the IAPO board and membership, we extend our condolences to her family, friends and the global SCD community.