Medical research is offering new hope to more than half a million kids who suffer from rare genetic diseases. Our provincial governments need to step up to the plate and make these new, potentially life-saving tests available to all Canadians. To give every child a chance to see their 10th birthday, let’s tell our governments to get in gear! Sign our petition and let our community’s voice be heard!
From Dr. Millan Patel, one of our founding members and our Director of Research:
Dear Caring Canadians,
One of my 5-year-old patients, Luke, has a devastating, super rare form of dementia. After the right genetic test, Luke had a successful bone marrow transplant and now his dementia is reversing itself! Every week, I see children who are suffering from terrible diseases that no one can figure out the cause of. I know that at least a third of these kids would be helped and many are like Luke and could be treated if only they had the right tests available to them.
Because genetic science is exploding, there are now thousands of new tests to help doctors like me diagnose rare illnesses and guide proper treatment. Unfortunately, provincial government processes to approve these tests are slow and haphazard.
Let’s get our governments in gear:
As a doctor, it’s heartbreaking for me to tell suffering families that there’s a simple genetic test available that could change their lives—but their child can’t have it because it has not been approved by the province yet. Moreover, there are thousands of families waiting for these kinds of tests all across our country.
In addition to giving families and their doctors the answers they desperately need, making these tests available to all Canadians could save our health care system millions of dollars every year. Sign this petition to convince our governments to put kids before bureaucracy and approve genetic testing for rare diseases now.
We are calling on Health Ministers of Québec (Hon. Dr. Gaétan Barrette), Ontario (Hon. Dr. Eric Hoskins), Alberta (Hon. Sarah Hoffman) and British Columbia (Hon. Dr. Terry Lake) to become Rare Champions by taking the lead in developing a Canada wide process to bring genetic testing access quickly to those who need it most. We need Rare Champions and these four Ministers are perfectly positioned to lead the way!
Click here to tell our Health leaders you want them to lead and deliver genetic testing for today’s patients:
I became a specialist in rare diseases because I saw how poorly our medical system is designed to care for patients when their illness is “rare” – that is, when it affects 1 in 2000 people or fewer. Fortunately, tremendous advances have been made in genetic testing in the last decade, providing families whose lives have been filled with heartbreak with much-needed hope and answers. If we raise our voices together, we can convince our governments that all Canadians deserve access to these important tests – no matter how rare their condition may be – and no matter which province they live in.
With hope and gratitude,
Dr. Millan Patel
Co-founder, Rare Disease Foundation
Clinical Assistant Professor, University of British Columbia