Helena Jaczek, Markham—Stouffville
Linked statement
“Over three million Canadians live with rare diseases. Our government is spending $1.4 billion to help them get life-saving medicine. A rare-disease group wants Parliament to improve testing, treatments, and care after 2027 so families can get help in time.”
“Mr. Speaker, although we call them rare diseases, cumulatively they affect over 3.2 million Canadians. They are debilitating and potentially life-threatening. One Canadian family watched their healthy 14-year-old child suddenly begin suffering from severe headaches, vision problems and exhaustion. After months of uncertainty, the child was diagnosed with glioblastoma, an aggressive and deadly brain cancer. Through early intervention, surgery, treatment and extraordinary courage, that child survived and today continues to inspire others facing rare diseases. Our government has committed $1.4 billion through agreements with all provinces and territories under the national strategy for drugs for rare diseases, to improve access to affordable and life-saving treatments. The Canadian Organization for Rare Disorders is calling on Parliament to strengthen the next phase of the strategy beyond 2027 by improving access to diagnostics, treatments, research and care for all Canadians living with rare diseases. No family should lose hope because help came too late.”
Mr. Speaker, although we call them rare diseases, cumulatively they affect over 3.2 million Canadians. They are debilitating and potentially life-threatening. One Canadian family watched their healthy 14-year-old child suddenly begin suffering from severe headaches, vision problems and exhaustion. After months of uncertainty, the child was diagnosed with glioblastoma, an aggressive and deadly brain cancer. Through early intervention, surgery, treatment and extraordinary courage, that child survived and today continues to inspire others facing rare diseases. Our government has committed $1.4 billion through agreements with all provinces and territories under the national strategy for drugs for rare diseases, to improve access to affordable and life-saving treatments. The Canadian Organization for Rare Disorders is calling on Parliament to strengthen the next phase of the strategy beyond 2027 by improving access to diagnostics, treatments, research and care for all Canadians living with rare diseases. No family should lose hope because help came too late.