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Vancouver Patient Empowerment meeting information – Oct 19 2019

Vancouver Patient meeting registration information

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Webinar Wednesday – June 12 – Dr. West

Webinar Wednesday Hosted by Ryan Deveau

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Webinar Thursday – May 30th – Dr. Banikazemi

Webinar Thursday Hosted by Ryan Deveau

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Important message from our friends at CORD

Please take the time to read CORD’s message: URGENT! Your Voice is Needed to Keep Rare Disease Drugs Coming to Canada Click here for the article   You can also visit the Canadian Organization for Rare Disorders (CORD) at their website https://www.raredisorders.ca/

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Rare Disease Day 2019 video

Hello everyone, thank you so much for a very successful Rare Disease Day. Below is a collage of the photos from the day!  

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Webinar Wednesday April 10th 2019

Hello CFA, Below are the details on the upcoming Webinar Wednesday. Join Zoom Meeting https://zoom.us/j/580994594 Meeting ID (if required): 580 994 594

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Rare Diseases allocated funds in the 2019 Federal Budget

The rare Disease Foundation has posted a great article on this: Click here to view their article

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Webinar Wednesday February 27 2019

Information on the Webinar hosted by the CFA

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AVROBIO announces updated clinical data for Fabry disease

Posted from https://www.businesswire.com

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Webinar Wednesday November 21 2018

Information on the Webinar hosted by the CFA

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Are You Interested in Sharing Your Experience with Fabry Disease?

Are You Interested in Sharing Your Experience with Fabry Disease? If so, Fulcrum Research Group, an independent, third-party market research firm, is seeking Fabry patients or their caregivers for a market research study. Specifically, the research will aim to gain a better understanding of individual patients’ experiences and opinions about: Their journey from initial symptoms […]

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