Project Description
Email: jon@fieroservice.com
Website: https://notacares.org/
The Network of Tyrosinemia Advocactes (NOTA)
NOTA was 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.
NOTA’s mission is to ensure that no individual around the globe goes untreated; that every parent has the support they need at critical times; and that newborn screening is efficient and never misses a child’s diagnosis.