The presence of proven inherited gene mutations that greatly reduce a carrier’s ability to ward off or fight breast, ovarian, prostate, and the related types of cancer such as pancreatic; OR where a family history of these cancer types exist, potentially due to a mutation that has not yet been discovered.
How many people have risky genes?
This number has increased drastically since hereditary cancer was first discovered in 1995, and researchers will continue to learn more. Based on even the most conservative data available to date, at least 1.3 million Canadians carry risky genes. Unfortunately, the vast majority remain unaware or misinformed.
Could I be affected?
Anyone can be found to carry risky genes. However, it is more likely if a biological relative has been identified as a risky gene carrier, if there is a family history of the cancer types involved, you are of a certain ethnic background , you have developed cancer at a young age or you have developed more than one cancer.
What if I do have risky genes?
The knowledge you are a risky gene carrier brings with it access to life-saving medical recommendations that includes increased cancer screening at younger ages, to find cancer when treatment is likely to be most effective and, in the case of hereditary breast and ovarian cancer, risk-reduction options proven to be up to 96% effective. For those unable to avoid a hereditary cancer diagnosis, knowing you are a risky gene carrier may provide access to promising new specialized treatments.
How do I find out if I have risky genes?
A simple genetic test will determine whether you are a risky gene carrier. This is usually in the form of a simple saliva or blood test. Ensure the services of a genetic counsellor is included and be sure you choose the best test type for your situation.
Our goal is to prevent hereditary cancer in as many risky gene carriers as possible and create better outcomes for hereditary cancer patients. We do this through awareness, advocacy, and education. Our vision is that all persons affected by risky genes have access to quality information and services so they have the opportunity to make informed decisions that could save their lives.
Our founder searched out information and support during her own journey but found none. In response, she brought together like-minded individuals to meet in her back yard and later form this organization, which remains the only of its kind in Canada. Incorporated in 2002, and formerly named the HBOC Society, through the years since we g
Our founder searched out information and support during her own journey but found none. In response, she brought together like-minded individuals to meet in her back yard and later form this organization, which remains the only of its kind in Canada. Incorporated in 2002, and formerly named the HBOC Society, through the years since we grew from a local support organization to one with national and international reach.
Since first discovered in 1995, knowledge has progressed from one type of hereditary cancer (breast) caused by mutations in only one gene, to several cancer types caused by mutations in any of many different genes, and researchers will continue to learn more. Unfortunately, this created fragmentation between cancer types, which created
Since first discovered in 1995, knowledge has progressed from one type of hereditary cancer (breast) caused by mutations in only one gene, to several cancer types caused by mutations in any of many different genes, and researchers will continue to learn more. Unfortunately, this created fragmentation between cancer types, which created huge barriers to patient identification and care. We want to bridge those gaps to ensure no one is left behind.
Hereditary cancer is more dangerous and far reaching than the same types of spontaneous cancer. If identified, risky gene carriers are provided the opportunity to find cancer early, prevent it from ever happening or gain access to more effective treatment options, saving countless lives. That being the case, when governments and large cancer organizations learned of this, one would assume they would have done everything possible to identify risky gene carriers to provide them with that opportunity. Instead, these entities downplayed the incidence and danger, obvious in the fact that 25 years later the vast majority risky gene carriers remain unaware. This is also obvious in fact that the medical community remains largely ill-equipped to identify and care for risky gene carriers and in the limited and fragmented services, resources, and research that exist to serve this high needs patient group. Of all the reasons that explain why risky gene carriers have been so underserved in the past and remain so today, the most impactful is the widespread public misperception that funding already exists through the large cancer organizations. If you aren't a risky gene carrier, you probably love someone who is, so please consider redirecting your efforts to make this organization your charity of choice.
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Disclaimer: This website is for educational and informational purposes only and may not be construed as medical advice, nor is this information intended to replace advice offered by medical professionals.
We will be dissolving The Risky Genes Society over the next few months and dispersing all remaining assets as required according to the Alberta Societies Act and Canada Income Tax Act. We wish all those affected by hereditary cancer a future of growing knowledge and awareness of how hereditary cancer can be prevented, detected and treated. All the best in health to those affected with hereditary cancer.
Feel free to explore our website but be aware that it is not being maintained.