Tyrosinemia Type II
Are there good support groups for Tyrosinemia Type II?
A support group for Tyrosinemia Type II is the Network Of Tyrosinemia Advocates (NOTA): http://notacares.org. The National Organization of Rare Diseases (NORD) also connects people with support groups for rare genetic conditions.
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Where do I find other people with Tyrosinemia Type II?
How do I start a support group for Tyrosinemia Type II?
The National Organization of Rare Diseases (NORD) has instructions on their web site for starting a patient advocacy organization. Opportunities for joining others with Tyrosinemia Type II can be accessed through RareConnect (https://www.rareconnect.org/en) and Patients Like Me (https://www.patientslikeme.com). Global Genes' Toolkits (https://globalgenes.org/toolkits/so-you-think-you-want-to-start-a-nonprofit/so-you-think-you-want-to-start-a-nonprofit-2/) also have suggestions for how to start a support group.