Important survey about hemophilia B gene therapy – THE CLOCK IS TICKING!

The 1st gene therapy for hemophilia B (factor IX deficiency) is currently undergoing an evaluation by Canadian health authorities. This review will determine whether or not this therapy will be made available to Canadians. In the coming weeks the CHS will present the patients’ perspective to the Institut national d’excellence en santé et services sociaux (INESSS), for Québec, and to the Canadian Agency for Drugs and Technologies in Health (CADTH) for the rest of Canada.

If you are a Canadian patient with moderately severe/severe hemophilia B, aged 14 years and older, or a caregiver of a patient with moderate/severe hemophilia B, we are inviting you to please answer a short survey, as soon as you possibly can.

The clock is ticking as submissions are due August 14 at the latest.

We would also greatly appreciate it if you could please share the link with your members and network so that the voice of everyone who is concerned is considered in this important decision.