News

Attention Canada’s Rare Disease Community!


Have you been asked to attend one of the Health Canada consultations?

If so, would you like to collaborate with CORD to ensure our voices are heard?

  • Health Canada’s Discussion Guide on its updated strategy is HERE.
  • CORD Response to Health Canada’s Discussion Guide National Strategy on rare disease drugs is HERE.
  • CORD’s 12 Step Process for the national Rare Disease Drug Strategy is HERE.
  • Our call-to-action on a whole new system that we’re currently consulting our community on is HERE.
  • CORD briefing notes for April’s roundtable with Health Canada on Phase II of the National Strategy for Drugs for Rare Diseases are HERE.

We’re concerned that the Health Canada proposals that are being put forward fail to provide the holistic solutions that we have been asking for over the many years. Here are a few background documents for your reference:

Please send a note to info@raredisorders.ca and let us know if you or your colleague will be attending and to which session you have been invited. Some of you are being invited as patients / individuals. Others are being invited as patient group representatives. CORD is looking forward to working with you and everyone in the sector to ensure patients can contribute effectively and GET THIS RIGHT!

#Canada4Rare www.canada4rare.ca

CORD Rare Diseases Submission
Discussion Guide rare disease treatment strategy
CORD Response to Canadian Government’s discussion guide rare disease treatment strategy.

CORD briefing notes for April’s roundtable with Health Canada
CAN Smart Rare Disease and Rare Drug Strategy

Press Releases

The Bayshore Foundation for Empowered Living, the charitable arm of Bayshore HealthCare, has donated $5,000 to the Canadian Organization for Rare Disorders (CORD). The donation was made in partnership with Bayshore Specialty Rx to support individuals in Canada who are affected by rare diseases.

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Event

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.

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Press Releases

The Bayshore Foundation for Empowered Living, the charitable arm of Bayshore HealthCare, has donated $5,000 to the Canadian Organization for Rare Disorders (CORD). The donation was made in partnership with Bayshore Specialty Rx to support individuals in Canada who are affected by rare diseases.

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