DAY 14

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Are you disappointed in our Canadian Government?

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3 weeks ago

CityNews Winnipeg
People with a rare, debilitating and deadly disease are calling on the government to provide access to a life-changing treatment. As Stefanie Lasuik reports, more than 40 countries already cover the drug for a wide variety of patients. ...

4 weeks ago

Cure SMA Canada shared a link.

1 month ago

Susi Vander Wyk - Interview

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Radio News 1010 interview

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Cure SMA Canada

1 month ago

Cure SMA Canada patient community rallied to bring attention to patient's fear of CADTH's recent recommendation for reimbursement of Spinraza. We are imploring the provincial health plans, the pCPA and Biogen to negotiate on behalf of all patients affected by Spinal Muscular Atrophy.
A press conference was held, followed by a march of protest where all were dressed in black to signify our mourning for the patients that are unable to access treatment, left without any other treatment options while living with a serious life limiting progressive disease.
A meeting was held with the pCPA office afterwards. ...

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Cure SMA Canada

1 month ago

Toronto Action Day!!!
March 13th, 2019

Be a part of front line advocacy, we need you and your friends to make a large impact!

On March 13, 2019, Cure SMA Canada will be holding a press conference at the Chelsea Hotel at 33 Gerrard St. West before we hold a demonstrative march which will take 10 minutes to 900 Bay St. where the pCPA office is. The pan Canadian Pharmaceutical Alliance actively negotiates on behalf of the provinces with the pharmaceutical company.
I have a meeting at 11:30am at the pCPA office in Toronto with a small group of patient representatives as well as physician will attend with me. This is our opportunity to be heard and seen! We want Spinraza for all patients!
We need as many people as possible to join us on that walk to the pCPA office as I will be alerting media to cover the story. Some of you have spoken to media lately, we need you to contact those reporters to invite them personally to the press conference and the march to the pCPA.

We will need as many people as possible to join us in the march to make the impact. Everyone dress in black from head to toe, call friends, family, neighbors, etc.

Please RSVP quickly as we have a very short time period to organize this event. To RSVP, please email curesma@telus.net with "I'm IN!"

Thank you,
Susi Vander Wyk\
Executive Director
Cure SMA Canada ...

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DAY 14

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