Latest and Past News
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The WFH Gene Therapy and Bleeding Disorders Registries
WFH Gene Therapy Registry, presented by Dr. Barbara Konkle For many years gene therapy has been in the future – but now, for an increasing...
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Two deaths in gene therapy trial for rare neuromuscular disease
The CHS recently learned of two deaths of children under five years old in a clinical trial using AAV8-based vectors in another rare disease area,...
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Four-year follow-up of Biomarin’s FVIII gene therapy
Dr. John Pasi, Centre Director at the Royal London Haemophilia Centre, presented 4-year follow-up data on Biomarin Pharmaceutical’s Phase 1 /2 gene therapy trial of...
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Redefining prophylaxis
A series of renowned speakers at the World Federation of Hemophilia Virtual Summit re-defined prophylaxis in this era of innovative therapies, including non-factor replacement therapies....
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My experience at the WFH Virtual Summit
I attended the WFH Virtual Summit and, although I would obviously have preferred to be there in person, I was impressed by the quality of...
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CHS Submission to the Canadian Agency for Drugs and Technologies in Health (CADTH) on Hemlibra
Montreal, July 21, 2020 – The Canadian Hemophilia Society has in recent days made submissions to both CADTH (Canadian Agency for Drugs and Technologies in...
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Critical need for harmonized post-marketing surveillance in gene therapy
With regulatory approval of the first gene therapy for clinical use outside of clinical trials anticipated in mid-2020, there is an urgent need to collect...
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Impressions of WFH Virtual Summit
Attending biennial World Federation of Hemophilia World Congresses was a highlight of my professional career in the pharmaceutical industry. From my first congress in Ireland,...
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Findings from a CHS “Dream of a Cure” research project now published
Findings from a two-year research project on inherited platelet function disorders led by Dr. Catherine Hayward of McMaster University as principal investigator, funded by a...
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Dangerously high FIX levels reported in hemophilia B gene therapy
Montreal – June 29, 2020 – During the question-and-answer period of a session on gene therapy during the World Federation of Hemophilia’s virtual summit (June...
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Home delivery for plasma protein products now in place
Montreal, May 21, 2020 – The Provinces and Territories announced this week a home delivery service for plasma protein products and their alternatives, including coagulation...
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Biomarin’s gene therapy for hemophilia A to be called Roctavian
Montreal, May 14, 2020 – Biomarin announced on May 11 its gene therapy currently awaiting approval by the U.S. Food and Drug Administration will be...
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Interview with Nurul Islam, president of the Hemophilia Society of Bangladesh
Interview with Nurul Islam, president of the Hemophilia Society of Bangladesh, about the role twinning played on their success in getting their government to fund...