About
About NOTA.
The Network of Tyrosinemia Advocates (NOTA) is a nonprofit organization created to bring together the Tyro community.
What started as a simple Facebook group has now turned into a worldwide community of families and friends who are or know someone who is affected by Tyrosinemia. Our goals are simple and aim to help spread information about Tyrosinemia and build a stronger community.
OUR MISSIONS.
- To insure that no child or individual around the globe goes untreated.
- That every parent knows that they are not alone in this struggle, and has the support they need at critical times.
- That newborn screening is efficient and never misses a child's diagnosis ever again.
GOALS.
- Insuring that no child or individual around the globe goes untreated.
- Providing families affected the resources available to them.
- Connecting multiple organizations worldwide to build a strong community.
- Supporting every parent. You are not alone in this struggle, and you have the support you need at critical times.
- Striving for perfect newborn screening in an effort to never miss a child’s diagnosis ever again.
- Gathering stories of our families, resources, recipes, and news related to Tyro to be shared with each other and hospitals.
RESOURCES YOU MAY NEED
