The Phase I Gene Therapy Study for Fabry Disease is looking to recruit interested patients. This is a first-in-human study for the treatment of Fabry disease.
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 […]
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 […]
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 […]
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
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 […]
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
The CFA set out to share the message of empowerment, to embrace what makes you rare, and own it.
Approximately 1/12 Canadians are affected by a rare disease and prompt diagnosis is imperative as symptom management, and treatment options can drastically improve quality of life. Share the message of awareness and find what makes you rare. Maclean’s Photo Credit: Patrick Chondon http://www.macleans.ca/sponsored/from-pain-to-empowerment-with-fabry-disease/
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