In order to access many of the support programs available to your patients, they may have to sign a Patient authorization for use and disclosure of personal health information (PHI). This can be done easily online using any electronic devices with access to internet. Your patients can sign electronically here (in English and Spanish language). Alternatively, a paper-based version in the Forms box below that can be signed off and sent by fax to: 1-800-842-5163.
Tools and Resources
Materials for Patients and Providers
Chinsky, J. et al, Genet Med. 2017 Dec; 19(12). Diagnosis and treatment of tyrosinemia type 1: a US and Canadian consensus group review and recommendations.
HCP Further Education
MENTOR® is a free online Tyrosinemia Type 1 training resource was developed by Ligia Smith, RD, CSP, LDN and MET-ED®. Learn about the background of Tyrosinemia Type 1: genetics, clinical presentation and diagnosis, nutrition management, clinical monitoring, management during illness and pregnancy, diet calculations and more.
Metabolic University® is an interactive, didactic program created by MET-ED® designed to provide training to dietitians and other medical providers working in the field of inborn errors of metabolism. Check the next event dates by clicking here.
Advocacy and Patient Groups
The Tyrosinemia Society The Tyrosinemia Society is the first and only international patient advocacy group for patients and families affected by Tyrosinemia that is led by a healthcare provider and a mother of two patients with Tyrosinemia.
National Organization for Rare Diseases (NORD) NORD is a patient advocacy organization, dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research and patient services.
NBS Connect, Patient Registry
The Newborn Screening (NBS Connect) Patient Registry is an internet-based support network for patients, parents and caregivers of individuals with inherited metabolic disorders (IMDs). NBS Connect strives to improve the quality of care of individuals with IMDs.
The Groupe d’Aide aux Enfants Tyrosinemiques du Quebec (GAETQ) The Quebec Tyosinemic Children’s Aid Group (GAETQ) was founded by parents who wanted to give themselves the means to address their child’s illness. The group provides resources for parents to meet the needs of their child with Tyrosinemia Type 1. The website is in French.
The Network of Tyrosinemia Advocates (NOTA) Starting as a simple Facebook Group, NOTA is a large community of families and friends who are or know someone who is affected by Tyrosinemia.
There are also a number of cooking and dietary support websites which may be useful:
Cook for Love
Cook for Love is a culinary non-for-profit organisation, dedicated to the phenylketonuria (PKU) community. PKU is a rare inherited metabolic disorder and similarly to Tyrosinemia Type 1, requires people with the condition to follow a highly restricted low protein diet. Cook for Love provides step by step instructions and videos for making meals and treats suitable for a low protein diet.