Lanre is the president/CEO of the Sickle Cell Awareness Group of Ontario (SCAGO) and the founding president/CEO of the Sickle Cell Disease Association of Canada (SCDAC). Under her leadership, Sickle Cell Disease (SCD) achieved a new level of visibility and recognition in Canada as her advocacy work resulted in improved patient access to life-saving and disease-modifying therapies.
A few of the achieved feats included an impeccable national research program, provincial SCD groups coming together, the inclusion of SCD in the newborn screening program of most provinces, drug approval, and the enactment of June 19th as the National Sickle Cell Awareness Day.
She is also a co-founder and the immediate past president/CEO of the Global Alliance of Sickle Cell Disease Organizations (GASCDO). In this role, she supported the foundational work essential to the formation and continuity of the organization.
During her tenure, the GASCDO achieved strong recognition within the global SCD community through partnerships with patients and their caregivers, patient organizations, care providers, hospitals, care provider institutions, and the industry. She also established programs such as the Global Sickle Cell Disease Family Network and disease-modifying webinars to support SCD families no matter where they live in the world.
GASCDO’s first awareness campaign, dubbed “SCD in My Language” was Lanre’s brainchild among other laudable feats.
Lanre also served as the chair of, Network of Rare Blood Disorder Organizations; member of, National Liaison Committee of the Canadian Blood Services; board member, Black Health Alliance; Chair, Governance Committee of the Sickle Cell Disease Association of Canada, and board member, Kerry’s Place.
Furthermore, the Ontario Hemoglobinopathy Patient Association (OHPA) and the Racialized Health Initiative Working Group (RHIWP) are two of the informal groups orchestrated by Lanre in order to address disparities in care, equity, diversity, and inclusion.
Lanre is nationally and internationally respected for proven leadership, ability in patient advocacy and support, patient engagement and relations, conflict resolution, organizational governance, compliance, and program development.
She has led and co-investigated research studies and received numerous awards including the Senate Canada 150 Award, 100 Accomplished Black Canadian (ABC) Women Award, and most recently, the Meritorious Service Medal (MSM) conferred by the Governor-General of Canada, Her Excellency, the Right Honourable Julie Payette.
Her passion for sickle cell advocacy stems from a personal instance hitting close to home. In the late ’90s, her brother, Sunday Afolabi, suffered from avoidable and treatable complications of Hemoglobin SS disease (Sickle Cell Disease) – leading to his preventable, premature death. This propelled within her, a passionate interest in patient quality-assessed care. From that time on, she immersed herself in community health advocacy and research initiatives.