Tyrosinemia Society, a New Rare-Disorder Patient-Advocacy Organization, Launches to Fulfil Needs of Families and Researchers
2019-06-10 Permalink:: http://pdpr.uk/pd94426/tyrosinemia-soc.html
There are presently four known types of tyrosinemia. The transient form usually resolves during the newborn period, but the other three types require expert lifelong care to prevent harm to children and adults with the disorder. The Tyrosinemia Society will focus on providing free education to families and caregivers about the present therapies for the disorder; future efforts will include funding of research to improve the lives of patients with tyrosinemia.
The mission of the Tyrosinemia Society is to educate and inspire individuals to advocate for those with tyrosinemia and related disorders. The tyrosinemia community of advocates, caregivers, and health professionals is a complex and evolving healthcare environment that will benefit from inspirational leadership and non-profit advocacy. The society is committed to excellence in education, scholarship, clinical practice, and service to families affected by tyrosinemia. To read more about the organization, visit the website at www.tyrosinemia.org or contact them via phone, email, Twitter, or Facebook.
The website for the Tyrosinemia Society will connect families, healthcare providers, researchers, and members of private industry who specialize in the treatment of rare disorders caused by changes in the tyrosine metabolic pathway. The website will provide peer-reviewed educational materials to the public regarding tyrosinemia.
The Tyrosinemia Society has enlisted the help of a voluntary board of medical/scientific advisors to review all of the educational materials before they are posted on the website. This peer-review process will maintain the highest level of accuracy and quality possible. Guidelines have been written for treatment of tyrosinemia type 1, but guidelines change over time as new therapies become available or when research evidence supports changes to these guidelines. The website will be used to communicate the latest recommendations or guidelines regarding tyrosinemia in simple, understandable language.
Future activities such as camps, fundraising events, and educational conferences will be announced on the website. The Society hopes to sponsor events where families affected by the condition can meet each other and learn about the best therapies. All are encouraged to join the Society’s advocacy efforts through the website, because all can contribute to efforts to advocate for those affected by tyrosinemia.
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Published for Tyrosinemia Society Inc by Press Dispensary