In order to access the many services available, you may need to sign a Patient authorization for use and disclosure of personal health information (PHI). This can be done easily online using any electronic device with internet access. You can sign electronically here (in English and Spanish language). Alternatively, you can find paper-based version in the Forms section below that you can sign and send the photo or scan by e-mail to firstname.lastname@example.org
Tools And Resources
Additional websites include:
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 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 including:
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 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.