Advocacy & Educational Resources 

The Network of Tyrosinemia Advocates

The Network of Tyrosinemia Advocates (N.O.T.A.) has been 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. Learn more

Tyrosinemia Society

The mission of the Tyrosinemia Society is to educate, inspire and support individuals to improve health outcomes and to advocate for those with the condition and their families. Learn more

Rare Disease Day

Rare Disease Day® occurs on the last day of February each year to raise global awareness of rare diseases. Learn more about this special day that honors those living with a rare disease and its impact on their lives.


National Organization for Rare Disorders (NORD)

NORD provides a unified voice for people battling rare diseases – those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.


Global Genes

Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. Their mission is to build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.

EveryLife Foundation for Rare Diseases

Castle Creek Biosciences is honored to support this program:

Please note: The third-party sites listed on this page are for informational purposes only. Castle Creek Biosciences makes every effort to offer the most useful and accurate resources available to people living with tyrosinemia; however, we do not endorse and are not responsible for the content found on these third-party websites.

Photo courtesy of the Pratt family. Used with permission