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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.

Download and read the full open letter:

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