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Nova Scotia Patient Empowerment Meeting

Hello Nova Scotia CFA members, A Patient Empowerment Meeting is coming your way! Put October 14th in your calendar and fill out the registration form to join us for an empowering day!   Below is the information and also please click here to register!  

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Winnipeg Patient Empowerment Meeting

Please keep reading for details! Registration: Click here

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Idorsia Pharmaceuticals Announcement

Full Press release link Idorsia Pharmaceuticals (www.idorsia.com), a Swiss biotech company, is developing lucerastat, a new oral therapy for patients with Fabry Disease. The Phase 3 clinical study MODIFY has just enrolled its first patients and will investigate the use of lucerastat monotherapy for the treatment of adult patients with Fabry disease, irrespective of their […]

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Survey: patients living with Fabry disease and their caregivers

The Canadian Fabry Association (CFA) is conducting a short survey with patients living with Fabry disease and their caregivers. If you qualify and successfully complete the survey, you will have the option to enter in a draw to win a CAN $150 gift certificate to Keg Steakhouse. You may complete the survey only once. Your […]

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*updated* Webinar May 16th 2018

Information on the Webinar hosted by Julia Alton

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Alberta/Saskatchewan *Agenda* – Patient Empowerment Meeting

Hello Everyone! The Agenda is now available here!! You can still click here to see the information and registration form for the Patient empowerment meeting in Alberta May 5th 2018. DATE: May. 5, 2018 TIME: 9:00am – 3:30pm (Time subject to change) LOCATION: Westin Calgary 320 4 Ave SW, Calgary, AB T2P 2S6 Thank you, Ryan […]

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Positive Recommendation for Reimbursement of Galafold

Please see the link to the original article here:   http://ir.amicusrx.com/news-releases/news-release-details/canadian-drug-expert-committee-grants-positive-recommendation

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*Updated* Ontario Patients “Gene Therapy for Fabry Disease” Agenda

Hello CFA Members, Please see the below agenda for the Ontario Patients “Gene Therapy for Fabry Disease” Information Meeting. FACT Information Session Toronto Airport Marriot April 7th, 2018  AGENDA 10:00               Arrival (beverages and snacks available) 10:30               Introduction 10:35               Dr. Michael West “Fabry Disease-Etiology and Conventional Treatment” 10:50               Dr. Aneal Khan “Fabry Disease Gene Therapy Trial” 11:05               […]

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Alberta/Saskatchewan – Patient Empowerment Meeting

Hello Everyone! Please click here to see the information and registration form for the Patient empowerment meeting in Alberta May 5th 2018. DATE: May. 5, 2018 TIME: 9:00am – 3:30pm (Time subject to change) LOCATION: Westin Calgary 320 4 Ave SW, Calgary, AB T2P 2S6   Thank you, Ryan secretary@fabrycanada.com

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Be Rare Be You 2018 a great success!

The CFA set out to share the message of empowerment, to embrace what makes you rare, and own it.

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