The Sickle Cell Awareness Group of Ontario (herein referred to as “SCAGO”) is a leading provincial charitable patient organization providing evidence-based support to families with children, adolescents, and adults, with sickle cell disease across the four regions of the province. It supports clinical research and engages in psycho-social research, health promotion, patient and care provider education, community awareness, and the development of best practices guidelines.
It engages in evidentiary advocacy with the government, schools, workplaces, and the healthcare system on behalf of people living with sickle cell disease. Since its establishment, SCAGO has continued to invest 100% of its resources in improving the quality of life of individuals and families affected by sickle cell disease.
A few of the Sickle Cell Awareness Group of Ontario’s key achievements include the successful advocacy for individuals with sickle cell disease and on continuous blood transfusion to have access to life-saving iron chelation drugs in support of their treatment regimen, and the passing of Bill 255, enacting June 19 as the Provincial Sickle Cell Awareness Day.
We rely on the generous support of our volunteers, donors, and partners in our shared mission to improve the lives of Ontarians living with sickle cell disease – and ultimately find a cure for this devastating disease.
Vision
Optimize the lives of individuals and families living with sickle cell disease (SCD). This is part of a broader vision for every Ontarian with sickle cell disease to have equal and equitable access to comprehensive, standard care regardless of the place of residence in the province.
Mission
To reduce the incidence of new sickle cell births and improve the quality of life of individuals and families living with sickle cell disease (SCD).
Objectives
1. To educate the general public about sickle cell disease (SCD) and sickle cell trait (SCT).
Strategy to Accomplish Objective
Provide public seminars, forums, in-school lectures, religious places presentations, law-enforcement education, etc.
2. Provide psycho-social support to patients and families with sickle cell disease
Strategy to Accomplish Objective
Organize support groups, clubs, etc.
3. Reduce the impact of poverty on patients and families with sickle cell disease
Strategy to Accomplish Objective
Provide emergency grants, scholarships, and other financial aid.
4. Provide a better understanding/knowledge of the disease to individuals with sickle cell disease, their caregivers, and families
Strategy to Accomplish Objective
Provide Learning for Life™ (LFL) educational sessions to improve disease management by families
5. To contribute to the educational advancement of students with sickle cell disease
Strategy to Accomplish Objective
Provide scholarships and grants.
6. Improve the quality of care and treatment received by individuals with sickle cell disease
Strategy to Accomplish Objective
A. Advocate on behalf of patients for life-saving drugs and treatments,
B. Provide education to the medical and allied health professionals on the subject of sickle cell disease,
C. Support and conduct sickle cell research initiatives,
D. Organize knowledge translation activities-Lunch and Learn (L&L) in the local hospitals.
Values
Patients and families come first at SCAGO and, as such, we EMPLOY the core values below:
S: Support patient and family-centered approach to the planning & delivery of our services.
C: Committed to improving our services to our constituents.
A: Accountable for our services, resources, and behaviors.
G: Gain recognition as the provincial voice for sickle cell disease.
O: Openness and transparency in our services.