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Fill out the form to send a message to your MP and provincial representative

For five years, we've been promised hope, but seen little progress. We, the rare disease community, face delays in diagnosis, lack of access to vital drugs, and a system failing to recognize the urgency of our suffering. One child dies from a rare disease every 18 minutes in Canada - our lives are literally on the line.

 

Yet, despite government inaction, we haven't given up. But we need your help.

Join us in demanding action:

  • Federal government: Release the promised funding for rare disease drugs - stop languishing in bureaucracy!
     

  • Provincial governments: Follow Quebec's lead and implement rare disease strategies.
     

  • Everyone: Join the #FightForOurLives. Share our stories, raise awareness, and hold our leaders accountable.
     

Together, we can turn hope into action.

Fill out the form to send a message to your MP and provincial representative

Download and read the full open letter:

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Rare Disease Day Summit 2024

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CORD 24 Sara E

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