Make Your Voice Heard

If you have hereditary tyrosinemia type 1 or are caring for someone who has hereditary tyrosinemia type 1, we would like to hear from you.

 Health Canada is currently reviewing the drug therapies -- nitisinone  (brand names: Orfadin and MDK-Nitisinone) -- two treatments for hereditary tyrosinemia type 1, to determine whether these drugs should be approved for access and usage in Canada through the Canadian Public Drug Plan. Currently, these drugs are made available through the Health Canada Special Access Programme.. As part of their review, Health Canada wants to hear from patients, caregivers and health care professionals to get a sense of the personal impact of this disease, how currently available treatments are working or not working and what outcomes are most important. when considering potential new treatments. 

The Canadian Liver Foundation is preparing a submission and we invite you to be part of it by sharing your comments and personal experiences.

Please note that the CLF does not recommend any particular drug for the treatment of hereditary tyrosinemia type 1.  We believe that patients and their doctors should have access to a broad range of treatment options in order to ensure the best possible outcomes. It is up to the doctors to make individual treatment recommendations based on the needs of their patients.  Our request for input for nitisinone is the result of a call for patient group input from Health Canada.

If you have experience with hereditary tyrosinemia type 1 and would like to share your comments, please click on the link below and fill out our survey. We will compile all feedback and include it in our submission to Health Canada.

Canadian Liver Foundation survey on hereditary tyrosinemia type 1. 

The deadline for submitting your comments is 5:00pm (EDT) on Monday, September 18, 2017.

If you have any questions about the survey or the Canadian Liver Foundation's submission to Health Canada, please contact Karen Seto at 1-800-563-5483 or email