We urgently need your help – and the help of your personal and professional networks – to #stopPMPRBnow!

Please follow the six (6) easy steps below to send out the “Friends & Family” email to encourage others to join our campaign – their participation is critical to our success!

  • Step 1: Open a new email in your personal email inbox
  • Step 2: Copy and paste this wording into the new email   *If you are experiencing difficulties with this document please email us at advocacy@pnhca.org
  • Step 3: Customize the yellow highlighted sections within the Friends & Family email
  • Step 4: Include a brief version of your personal story in paragraph 3 to help others understand why this issue is important to you, and therefore, why it should be important to them – and motivate them to take action! [This is optional – you can also send the email as is]
  • Step 5: Send the email to anyone in your network that you think would be willing to participate in this campaign – friends, family, co-workers, neighbours
  • Step 6: Follow up with your network to remind and encourage them to take action!

Anyone can participate – even those not directly affected by PNH or other rare diseases.

The countdown is on – we have less than three months to #stopPMPRBnow!

To learn how to use the tools on the #stopPMPRBnow e-advocacy platform, check out our short video here

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