Hereditary tyrosinemia (HT-1) advocacy and support groups can be a great resource for information and interacting with others affected by this condition. Cycle Pharmaceuticals can put you in touch with HT-1 patient advocacy groups such as the Network of Tyrosinemia Advocates (NOTA), the National Organization for Rare Diseases (NORD) and provide you with other sources of information. You can also bookmark our website, www.nityr.us, to access the latest information and updates on HT-1.
Many patients and families find support when they connect with others affected by HT-1. Many have faced the same challenges you have, and this community may offer guidance, recommend clinicians and coping strategies that work well for their families. It’s also about support. When families communicate, they feel less isolated and more empowered to take control of living with HT-1. NOTA maintains a Facebook group to connect and support people affected by tyrosinemia.
There are examples of other support groups and resources below which you may find useful as you and your family navigate life with HT-1. Just make sure you’re seeking information and help from a reputable source online.
NITYR Tools and Resources
- Prescribing information
- Instructions for use
- NITYR Patient Initiation Brochure - updated December 2018
- Consultation Guide
- Video - NITYR infant administration video
- Videos - NITYR patient testimonials
- Enrollment form - updated December 2018
- Free trial offer enrollment form - updated December 2018
Additional websites include:
The Network of Tyrosinemia Advocates (NOTA) Starting as a simple Facebook Group, NOTA has evolved into a worldwide community of families and friends who are or know someone who is affected by Tyrosinemia. The organization aims to help spread information about Tyrosinemia and build a stronger community.
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.
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.