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Tools and Resources

Additional Tools and Resources


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 an online training resource created by MET-ED®. It is a series of courses and topics on the nutrition management of metabolic disorders.

Metabolic University® is an interactive, didactic program created by MET-ED® designed to provide training to dietitians and other medical professionals working in the field of inborn errors of metabolism. Check the next event dates by clicking here.

Advocacy and Patient Groups

The Tyrosinemia Socierty The Tyrosinemia Society is the first and only patient advocacy group in the world for patients and families affected by Tyrosinemia. It is lead by a healthcare professional 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 HT-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 HT-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.


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