Access to Specialty Drugs Under Pharmacare
Specialty Drug Issues
Do you or someone you care for rely on a specialty drug to manage a condition? Do you have concerns or have you experienced challenges getting access to a biologic, complex, personalized, rare, or combination therapy that would be your best treatment option?
There is no exact definition but specialty drugs are described as “high complexity” (biologics, drug combinations), high touch (injection, special handling, monitoring), and high cost. They are often more targeted, effective, personalized, and advanced that traditional medicines (older, simple, pills). Specialty drugs often treat complex, chronic, and/or rare conditions including cancer, rheumatoid arthritis, multiple sclerosis, lysosomal storage diseases, neuromuscular diseases, and cystic fibrosis. This survey is being conducted by the Canadian Organization for Rare Disorders (CORD) with the Institute for Optimizing Health Outcomes (IOHO) to learn from Canadians their experiences accessing specialty drugs. In addition, we are asking opinions about how specialty drugs should be available in a National Pharmacare program. This feedback is very important.
Link to Survey: https://bit.ly/3jKFYap
RARE DISEASE DAY 2024 CANADIAN ILLUMINATIONS
On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare Amherst Town Hall in Amherst Nova ScotiaBrampton Clock TowerBritish Columbia LegislatureBritish Columbia PlaceCalgary TowerEdmonton High Level BridgeEdmonton TowerFred A. Lundy bridge in Newmarket, ONMississauga City HallNanaimo BastionNiagara Falls (10:00pm – 10:15pm.) [Live cam link: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str]Niagara sign in Thorold/Niagara regionOakville Town HallOlympic Cauldron Vancouver Convention CentrePeterborough City HallSales Of Light VancouverScience World Vancouver (FEB 28th)Signal Hill in St. John’s, NLThe Hamilton SignToronto CN TowerToronto Sign in Nathan Phillips SquareVaughan City HallVancouver Convention CentreThe Peace Bridge between Canada and the US Winnipeg Sign Winnipeg Bridge Let us know if there are other Canadian illuminations to add. Tag us on social media @raredisorders (Twitter/X), @raredisorders_cord (Instagram) or email us at info@raredisorders.ca with your photos of the monuments and Rare Disease Day events.
Join us and become part of an active Canadian rare disorder community. The only national organization representing all rare disorder patient groups in Canada.
LEARN MORE