Southeastern Ontario

Youth with Sickle Cell Disease

Le Centre d'équité en matière de vaccins sert de plateforme centrale pour les ressources en vaccins et les engagements collaboratifs visant à soutenir le travail en matière d'équité en matière de vaccins pour la communauté de la drépanocytose. Le centre comprend des ressources éducatives et des stratégies visant à améliorer l'équité en matière de vaccins dans la drépanocytose. Le but du centre est de faciliter l'échange de connaissances et de susciter une action collective pour relever les défis de la vaccination auxquels sont confrontées les personnes affectées par la drépanocytose.

The Sickle Cell Awareness Group of Ontario (SCAGO) welcomes you to the Southeastern region of Ontario which includes Ottawa, Kingston, and environ. the SCAGO works with the sickle cell disease comprehensive care centers within the Children’s Hospital of Eastern Ontario (CHEO) and the Ottawa Hospital (TOH). More recently, the SCAGO struck a partnership with the Providence Care Hospital in Kingston, Ontario, especially in the area of mental health to assure optimal care for people living with sickle cell disease and their families.

The Southeastern region also serves families from Gatineau in Quebec that receives care at the CHEO and TOH.

We thank Drs. Robert Klaassen, Ewurabena Simpson, and their team at CHEO, Drs. Alan Tinmouth, Melissa Toupin, and their team at the Ottawa Hospital as well as Dr. Deji Ayonrinde for their continued support of the Sickle Cell Awareness Group of Ontario’s quality of life (QOL) enhancing programs.

A bit of History: The Southeastern region was established on September 18, 2015, and Rachid Barry was its first volunteer coordinator serving the region until June 2018.

For questions, comments or to join the Southeastern SCAGO’s family, please email: ottawa@sicklecellanemia.ca

To subscribe to our newsletters, or join the larger SCAGO family, please complete the appropriate forms here.

The SCAGO engages in various awareness activities in the Southeastern region not limited to the proclamation of June 19 as World Sickle Cell Day in Ottawa and the city hall illumination in Kingston to celebrate June 19. Other activities of the SCAGO to raise awareness around sickle cell disease (SCD) and sickle cell trait (SCT) are listed below:

To ensure there is a safe and adequate supply of phenotype-matched blood for individuals with SCD, we organize blood donation drives at the University of Ottawa, Carlton University, Ottawa, and Queen’s University, Kingston.
To reduce ignorance around SCT and SCD among young people, we engage our student volunteers to share information leaflets, bracelets, mugs, sweaters, and other awareness materials across the Southeastern universities and the Southeastern broader community.
Marathon events: We hold various fundraising events including marathons to raise awareness and vital funds for the organization.

Interested in volunteering with us to support awareness activities in the Southeastern region, please complete the volunteer application form here. To download or read some of our awareness information materials, please visit here.

To ensure there is a safe and adequate supply of phenotype-matched blood for individuals with SCD, we organize blood donation drives at the University of Ottawa, Carlton University, Ottawa, and Queen’s University, Kingston.
To reduce ignorance around SCT and SCD among young people, we engage our student volunteers to share information leaflets, bracelets, mugs, sweaters, and other awareness materials across the Southeastern universities and the Southeastern broader community.
Marathon events: We hold various fundraising events including marathons to raise awareness and vital funds for the organization.

The SCAGO and its regions including the Southeastern region engage with the Ministry of Health in a central advocacy program on behalf of families affected by SCD in Ontario; while each region advocates with schools, hospitals, and workplaces, on behalf of the families they support in their localities.

In 2022, the SCAGO successfully advocated with the Ministry of Health to support the staffing needs of 5 sickle cell centers including the CHEO and the TOH hemoglobinopathies clinics. The goal of the advocacy work is to improve access of families affected by SCD to comprehensive care no matter where they live in the province.

Have some background in advocacy, join our team by completing the volunteer application form here.

The SCAGO’s education program supports disease management for families affected by SCD and knowledge translation for health care providers (HCPs). Both the disease management program dubbed the Learning for Life series and the Lunch and Learn sessions with HCPs are co-hosted by both the CHEO and TOH hospitals.

For past LFL webinars to support peers and families living with SCD, please visit here.

For resources to support peers and families with SCD, please visit here.

For resources including guidelines to support HCPs, visit here

For past LFL webinars to support peers and families living with SCD, please visit here.

For resources to support peers and families with SCD, please visit here.

For resources including guidelines to support HCPs, visit here