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Show your Support for the Orphan Drug Regulatory Framework: Send a Template Letter to your Local MP

Fellow members of the rare diseases community:

Now is a critical time for our campaign to implement a federal orphan drug regulatory framework and an intergovernmental initiative to help fund rare disease treatments so that no Canadian is left behind.

Attached is a template letter that we urge you to consider writing to your MP.  French Template Letter

We once again need your help and that of your communities – please help spread the word through your networks. Letters to MPs don’t require any postage. Simply include all or part of the following messages, and thank you for contributing your voice to this important national effort.

FIRST: Find out who your MP is if you don’t already know by entering your postal code at this WEBSITE.

SECOND: either email or send by post (no postage required) a letter like our template attached here. Feel free to add your story or connection with rare disorders, as personalizing the message will help bring home the need for national action! (French Template Letter)

THIRD: if you get a response, share it with us by sending us a copy at info@raredisorders.ca.

Sincerely,

Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders

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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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.

Shares

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