Useful Resources

In order to access many of the support programs available to you, you will need to sign a patient authorization for use and disclosure of personal health information (PHI) form. Please see the links below for our Cycle Vita PHI forms which are available in English and various other languages. Translation services are available if you speak a language not covered below.

Additional websites* include:

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 support.

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.

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.

Cooking and dietary support websites which may be useful:

Cook for Love

Cook for Love is a culinary not-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.

* Cycle Pharmaceuticals is not affiliated with these organizations. These organizations are provided for reference, and Cycle Pharmaceuticals does not recommend one over the other. The content of these websites is the sole responsibility of the website providers. Cycle Pharmaceuticals cannot guarantee the services offered by these organizations and does not control, review, edit, or influence this third-party content.