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Dear Friends & Family:

I/We hope this email finds you keeping safe and staying well during this challenging time. I am/We are reaching out to you today to ask for your help with an issue of some urgency that is quite important to me/our family and to many others living with rare diseases in Canada.

As you may know, I/[patient’s name] was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a debilitating and life-threatening bone marrow disease that affects the blood and major organs. I/We have faced uncertainty numerous times since I/[patient’s name] was diagnosed with this very frightening disease, but thankfully, I/[patient’s name] was able to get access to the care and treatment I/[patient’s name] needed to go on living.

INSERT A BRIEF PARAGRAPH OUTLINING YOUR PERSONAL STORY AND THE LINK YOU HAVE TO PNH – FOR EXAMPLE, HOW YOU/YOUR LOVED ONE/FAMILY HAS BEEN COPING WITH THE DISEASE SINCE BEING DIAGNOSED.

While there is currently no cure for PNH, I/we can tell you that if patients had not been able to access the first (and still only) treatment available for PNH through public funding, many would not be alive today. However, no single treatment is the solution for everyone with PNH and, therefore, any barriers to additional treatment options put lives at unnecessary risk.

Unfortunately, the uncertainty caused by the proposed amendments to the Regulations governing the Patented Medicine Prices Review Board (PMPRB) and the regulation of drug prices in Canada – set to come into force on January 1, 2021 –  is already having a quantifiable and detrimental, if not deadly, impact on Canadians living with PNH and other rare diseases by limiting access to another Health Canada approved treatment option, clinical trials and global innovations in PNH therapies.

Those living with rare diseases – including PNH – cannot accept that lives continue to be put at risk by the uncertainty generated by the PMPRB reform process to date. Our communities may be small, but with your help our voices will be heard by federal, provincial and territorial decision makers all across the country.

Lending your support will only take a few minutes and will make a huge impact on our advocacy work! And, you can help us no matter where you live – both in Canada or abroad. Visit or click on any of the links below for 3 simple things you can do to help us #stopPMPRBnow:

  1. Email decision makers  quick! (For those with a Canadian address only)
  2. Tweet to decision makers  really quick! (Everyone can do this – no matter where you live)
  3. Share with your social network and ask for their help  really important!

If you did #1 or #2 above, please follow up with decision makers by re-sending the email letter or tweet, even once a week, until you hear back – we have less than three months to make our voices heard!

We would be very grateful for any help you can provide in our campaign. Remember – we only have until the end of 2020 to protect Canadian lives!

Thank you and take care,

YOUR NAME

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

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