Our Work with Health Charities and Patient Organizations
In the past years CTO has worked, and continues to work, with a range of health charities and patient organizations interested in clinical trials. For example, CTO has hosted events to better understand what types of resources would be helpful for these organizations; is developing a survey to explore attitudes and perceptions about clinical trials; is helping these organizations to share their own resources and tools related to clinical trials with each other; and, has invited individuals from these organizations to present at CTO’s annual conference on clinical trials.
These organizations share information provided by CTO with their stakeholder groups, which may include opportunities to: collaborate in research projects; apply to become a community representative on a research ethics board or part of an advisory group; attend conferences or events related to research and clinical trials; and, learn about new resources that have been created about clinical trials.
As mentioned above, CTO is currently working with health charities and patient organizations to help understand attitudes and perceptions about clinical trials within their own communities. By developing and hosting a survey in collaboration with these organizations and with expertise from the Ottawa Health Research Institute, we hope to learn more about the kind of information and resources that people feel would be helpful about clinical trials. If you are interested in learning more about our efforts related to this survey, please contact us at info@ctontario.ca.
The organizations listed below are some of those that CTO has worked with collaboratively that have agreed to share their information here. If your organization would like to collaborate with CTO, please contact us at info@ctontario.ca.
Some of the organizations CTO works with include those listed below. Click on the logo to visit the organization’s website.
Brain Tumour Foundation of Canada
Brain Tumour Foundation of Canada is the only national charity offering information and support to patients affected by any kind of brain tumour – be it cancerous, non-malignant or metastases. The organization funds ground-breaking research across North America and, since 1982, has dedicated over $7.2 million to finding a cure and improving treatment for brain tumour survivors. Brain Tumour Foundation of Canada is funded solely through generous contributions from individuals, corporations, organizations, employee groups and special events. Learn More.
Canadian Arthritis Patient Alliance
The Canadian Arthritis Patient Alliance (CAPA) is a virtual, grass-root, patient-driven organization with members across Canada. CAPA believes the first expert on arthritis is the person who lives with arthritis. CAPA facilitates links between Canadians with arthritis and their support systems through collaboration and partnerships with other organizations, representatives from all levels of government, researchers, and other individuals; and through communicating information on health policy issues, research, technology and emerging issues relevant to members. Learn More.
Canadian Breast Cancer Network
The Canadian Breast Cancer Network is Canada’s leading patient-directed breast cancer health charity. We strive to voice the views and concerns of breast cancer patients through education, advocacy activities, and the promotion of information sharing. Learn More.
Canadian Cancer Survivor Network
The Canadian Cancer Survivor Network works to increase advocacy and to train patient/survivor advocates to promote and engage in the development of policy for optimal cancer care and follow-up for patients, survivors, their families and communities. Learn More.
The Canadian Continence Foundation
The Canadian Continence Foundation (CCF) is the Canadian patient voice for those living with incontinence and is the only national, charity/not-for-profit patient organization addressing their needs. We produce and distribute, “The Source”, a detailed urinary and faecal incontinence management guidebook, we offer a telephone and online helpline and numerous other resources for caregivers and those living with incontinence. The Foundation also advocates on the behalf those living with incontinence by lobbying the government for better access to treatment and management products.
The Foundation has published many research papers and surveys across Canada. In addition, CCF was responsible for having incontinence absorbent products and pads listed on the WHO list of 50 essential assistive devices. CCF has been a World Federation of Incontinence and Pelvic Problems (WFIPP) member since 2009 where its CEO has been the Vice-president since 2010. CCF’s mission is to enhance the quality of life for people experiencing incontinence through education; by helping them, and/or their caregivers, to seek and access cures and treatment options. To this end, the Foundation implements and encourages public and professional education, advocacy and research to advance incontinence treatment and management. Learn more.
Canadian PKU Network
The Canadian PKU and Allied Disorders (CanPKU) is a non-profit driven by affected families and adults and is the only organization of its kind in Canada. PKU is a rare genetic disorder which is not life-threatening, only brain-threatening. Every baby born in Canada is to be tested for PKU on the second day of life. CanPKU supports people and families living with PKU or an allied disorder by providing accurate and up-to-date information, peer support, education and networking events and advocacy for unmet needs for clinical care and treatments and social supports. We encourage people to volunteer for clinical trials. Learn More.
Canadian Psoriasis Network
The Canadian Psoriasis Network (CPN) is a national non-profit organization focused on enhancing the quality of life of people with psoriasis and psoriatic arthritis. We do this by providing current information on research and treatment options and by working with others to build awareness and advocacy about the complexity of these conditions. Learn More.
Canadian Skin Patient Alliance
The Canadian Skin Patient Alliance (CSPA) is a national non-profit organization dedicated to advocate, educate and support Canadians living with skin diseases, conditions and traumas. Our mission is to promote skin health and improve the quality of life of Canadians living with skin conditions, diseases and traumas. We advocate for best treatment options for all skin patients; we educate on a variety of issues affecting these patients; and we support the members of our Affiliate organizations who work specifically on their disease areas such as acne, scleroderma, melanoma and psoriasis. Learn More.
Canadian Spondylitis Association
The Canadian Spondylitis Association (CSA) is a national non-profit organization dedicated to support, educate and advocate on behalf of Canadians living with Spondyloarthritic conditions including Ankylosing Spondylitis, Psoriatic Arthritis, Axial Spondylitis, Juvenile Spondylitis, Enteropathic Arthritis and Undifferentiated Arthritis. The CSA’s mission to be the leading voice for the spondyloarthritis community in Canada, providing innovative support, education, advocacy and programs for patients, caregivers and healthcare professionals. We advocate for all Canadians to have equal access to medications and services that play a role in managing symptoms and slowing disease progression. We provide a variety of platforms to educate and support people on disease and symptoms management of spondyloarthrits. Learn more here: www.spondylitis.ca.
Colorectal Cancer Canada
Colorectal Cancer Canada (CCC) is dedicated to increasing awareness and education of colorectal cancer, supporting patients, and advocating on their behalf. As a patient-based organization, CCC carries out a wide variety of awareness and education events both for the public and health professionals. CCC regularly interacts with public agencies and officials to promote effective health policy in connection with colorectal cancer screening, primary prevention, clinical trials and equal and timely access to effective treatments. Learn More.
Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world’s top three charitable organizations committed to finding a cure for cystic fibrosis and is an internationally-recognized leader in funding CF research, innovation, and clinical care. Since 1960, Cystic Fibrosis Canada has invested more than $261 million in leading research, care and advocacy, resulting in one of the world’s highest survival rates for Canadians living with cystic fibrosis. Learn More.
Foundation Fighting Blindness
Established in 1974, Fighting Blindness Canada (FBC) is the leading sight-saving charity in Canada dedicated to ending blindness. We support world-class researchers who work to understand, preserve and restore sight for people and families living with blinding eye diseases. Learn More.
Huntington Society of Canada
The Huntington Society of Canada aspires to a world free from Huntington disease. The Society maximizes the quality of life of people living with HD by delivering services, furthering research to slow and prevent Huntington disease and enabling others to understand the disease. Learn More.
The Leukemia & Lymphoma Society of Canada
The Leukemia & Lymphoma Society of Canada (LLSC) is the largest health charity devoted to all blood cancers. Our mission is to cure blood cancers and provide support to patients and their families. The LLSC funds innovative blood cancer research geared at advancing patient therapies and improving the quality of life for blood cancer patients. Learn More.
Lymphoma Canada
Lymphoma Canada is the only national organization focused entirely on lymphoma and CLL. It is a registered charity dedicated to advancing the understanding, treatment and management of the illness and accelerating access to effective new therapies for all Canadians living with lymphoma and CLL.
LC is a patient-focused organization with a commitment to improving the life of those living with lymphoma and CLL by:
- Providing educational resources to patients, families and caregivers
- Increasing awareness of the disease and its effects on the lives of patients and their families
- Empowering patients and caregivers through community engagement
- Facilitating access to new therapies, treatment options and healthcare resources
- Advancing clinical research and promoting access to new drug trials in Canada
Lymphoma Canada’s mission is to empower patients and the lymphoma community through education, support, advocacy, and research. Learn more.
MitoCanada
Without energy, we cannot survive. It is as simple – and complex – as that.
The human body is fuelled by trillions of microscopic powerhouses called mitochondria. When mitochondria are dysfunctional, the impact on the body can be devastating. Those affected can suffer a myriad of symptoms that cause health and quality of life to decline and, for too many, result in death.
Mitochondrial disease can affect anyone at any age. There is no cure.
MitoCanada is dedicated to creating a world where all lives are powered by healthy mitochondria.
For over ten years, MitoCanada has worked tirelessly to help support and protect Canadians living with or at risk of developing mitochondrial disease. To drive meaningful change, MitoCanada focuses its energy on four impact areas: support, awareness, education and research.
We use our collective energy to reduce the devastating impact of mitochondrial disease and support individuals, families and caregivers on their mito journey.
Myeloma Canada
As a patient-driven, patient-focused grassroots organization, Myeloma Canada drives collaborative efforts to unify the voice of the community to effectively shape the Canadian treatment landscape with a committed focus on the improvement of patient outcomes by:
- Providing educational resources to patients, families and caregivers
- Increasing awareness of the disease and its effects on the lives of patients and their families
- Facilitating access to new therapies, treatment options and healthcare resources
- Advancing clinical research and promoting access to new drug trials in Canada
- Empowering patients and caregivers through community engagement
Myeloma Canada, in partnership with the Myeloma Canada Research Network (MCRN), is dedicated to advancing the understanding, treatment and management of the disease and accelerating access to game-changing therapies for Canadians living with myeloma
The MCRN, comprised of Canada’s leading researchers and clinicians from across the country, develops and supports Canadian-designed clinical trials nationwide, publishes consensus statements on the management of the disease and collects data for its innovative national database, a key stepping stone in the search for a cure. Learn More.
Ovarian Cancer Canada
Ovarian Cancer Canada champions the health and well-being of women with ovarian cancer and others at risk of this disease while advancing research to save lives. Ovarian Cancer Canada’s vision is that women with ovarian cancer, and all women at risk of the disease, live fuller, better, longer lives and is the only registered Canadian charity solely dedicated to overcoming ovarian cancer. Learn more.
Save Your Skin Foundation (SYSF)
Save Your Skin Foundation (SYSF) is a patient-led not-for-profit organization dedicated to the fight against non-melanoma skin cancers, melanoma, and ocular melanoma through education, advocacy, and awareness initiatives across Canada. SYSF is dedicated to providing a community of oncology patient and caregiver support throughout the entire continuum of care, from prevention and diagnosis to survivorship. Save Your Skin Foundation is also the founding member of CONECTed, All.Can Canada, and the COVID-19 Task Force. For more information please visit saveyourskin.ca
Sickle Cell Awareness Group of Ontario
The Sickle Cell Awareness Group of Ontario (SCAGO) is a registered charitable patient support and advocacy organization. We put patients and families affected by Sickle Cell Disease (SCD) first and advocate on their behalf with the government, schools and the healthcare community. SCAGO supports clinical research, engages in psycho-social research, health promotion, education, awareness and development of best practices guidelines. Its vision is to reduce the number of new SCD births while optimizing the lives of individuals with SCD. Learn More.
