Every now and then, you come across important information that really screams for your attention and you’ve just gotta share it. Here’s the scoop! If your loved one has been…
I feel so inspired by Canadian doctors and their healthcare system! I recently read an interesting post from Julie; she and her husband live in Canada and are the proud…
When Jon Miller, president and founder of the Network of Tyrosinemia Advocates (NOTA), learned of a family in Puerto Rico who had moved to Connecticut to get treatment for their…
At the age of 10, Cassie Barnby began educating medical students about a rare disorder called tyrosinemia which affects only 1 in 120,000 people. Now 17, and a senior in high school,…
There are actually three types of the disease called Tyrosinemia, but in this post, we're only going to focus on Type I. Tyrosinemia, type 1 (TYR 1) is a genetic disorder…
News services recently picked up a fascinating story that I think everyone should read! Little 8-year-old Kayleigh Petersen, from East Brunswick, New Jersey, stunned a packed crowd of loyal hockey…
When lives hang in the balance, should the needs of a few trump the bottom line? That question was all too real for one Australian mother, Shanna Druisi. As reported in…
Who knew that good ol' colonialism could be a leading cause of rare diseases?! At least, that's the case for many Quebecers. Tyrosinemia, which affects about 1 in 100,000 babies…
The Schriever Air Force Base tells the story of Caden Rose, an 18 month year-old diagnosed with a very rare genetic disorder called tyrosinemia type 1. The disorder makes the body unable…
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