© 2019 Tyrosinemia Society, Inc.

About the Tyrosinemia Society

Working Towards a Brighter Future

Mission

Educate and inspire individuals to improve health outcomes and advocate for adults and children with Tyrosinemia and related disorders. The Tyrosinemia community of advocates, caregivers and health professionals is a complex and evolving health care environment that will benefit from inspirational leadership. In collaboration with universities and health care industry professionals, we are committed to excellence through advocacy, education, scholarship, clinical practice, and service to families affected by Tyrosinemia.

Vision

To have a global reputation for transforming health care outcomes for those affected by Tyrosinemia and related disorders through advocacy, education, and research.

Core Values

  • Awareness- Raise social awareness of the disease

  • Compassion- Promote dignity and respect for those affected by tyrosinemias

  • Integrity- Resolutely adhere to the highest moral and ethical standards

  • Inspire- Role-Model and mentor others to advocate for those affected by tyrosinemias

  • Care- Embrace cultural humility, diversity, and person-centered care

  • Excellence- Pursue and achieve advocacy goals to the highest caliber

  • Wellness- Maximize well-being in the population affected by tyrosinemias

Who We Are

The Purpose of Tyrosinemia Society, Inc.

It is our desire for the Tyrosinemia Society, Incorporated (TS, Inc.) to serve as an international fundraising organization with the purpose of helping those effected by Tyrosinemia and related disorders. Tyrosinemia is a rare genetic disorder that does not yet have a robust campaign platform from which to raise funds on an international level, and that is the gap the TS, Inc. would like to fulfill.
The purpose of the TS, Inc. will be to increase awareness, improve patient outcomes, and support research funding to cure Tyrosinemia. Through education and public service, TS, Inc. will better educate the general community and caregivers of clients with Tyrosinemia. The society will create training resources that will improve client outcomes living with Tyrosinemia. Eventually, it is hoped that adequate resources will be obtained to plan social events for families living with Tyrosinemia. Additionally, in the future the Annual Tyrosinemia Conference could be hosted providing families and key stakeholders an opportunity to network with experts regarding the care and management of Tyrosinemia.

Tyrosinemia Community

Key Issues

  • Lack of non-biased information about Tyrosinemia research, treatments, and ongoing management of the condition.

  • Lack of investment in new treatments and improving current treatments from pharmaceutical companies due to the small patient population.

  • Lack of a platform needed to read the latest news about Tyrosinemia.

  • A platform for families to communicate with each other with the participation of HCPs to advise if needed.

  • Lack of funding for more Tyrosinemia research.

Volunteer Group