The world’s largest integrated community, health management, and real-world data platform PatientsLikeMe (PLM) announced today it is partnering with the Tyrosinemia Society to enhance patients’ understanding of Tyrosinemia’s staging and subtypes through education and peer-to-peer knowledge-sharing, as well as to expand researchers’ knowledge of the condition by conducting a natural history study and analysis of patient-generated data. This collaboration, just in time for Rare Disease Day on February 28, will support children, adults and families grappling with Tyrosinemia and empower them to make their voices heard, learn from others who have faced the same experiences as them, and accelerate development of treatments and cures through participation in research. Through this partnership, PLM and the Tyrosinemia Society aspire to improve outcomes and quality of life across the Tyrosinemia community.
Rare disease patients all over the world face challenges navigating the complex healthcare system, and given the circumstances surrounding COVID-19, it is important now more than ever to connect with patients and families to develop a better understanding of the patient experience and to show others how they, too, can live with their condition. PLM will also work with the Tyrosinemia Society to guide patients through their care journey by developing an online community to support Tyrosinemia patients and caregivers, co-develop and provide educational content to increase condition awareness, help with condition management and expand knowledge of current and future treatments, provide opportunities to participate in research, and lay a scalable path for other rare disease advocates to follow.
“We are extremely pleased to be working with PatientsLikeMe at this pivotal moment in history,” said Elizabeth Barnby, DNP, ACNP-BC, FNP-BC, CRNP, President of the Tyrosinemia Society. Dr. Barnby co-founded the Tyrosinemia Society after raising two children living with Tyrosinemia, who inspired her to undergo her journey from mother to researcher. She is an expert researcher on Tyrosinemia and is a pillar of support to children and families affected by the condition.
“The Tyrosinemia community has so much to offer individuals as they navigate their journey with the condition,” said Brad Hornback, Lead Community Manager for PatientsLikeMe. “The opportunity to partner with the Tyrosinemia society and build an online space for community education and support is something we are thrilled to be a part of.”
“This partnership is exciting in many ways, but the most exciting thing for us is that we get to continue our mission of elevating the patient voice to the level of data while bringing focus to a little-known and little-studied condition,” continued Dr. Kate Burke, Senior Medical Advisor for PatientsLikeMe. “As we involve more and more individuals in research and empower them to share their stories, we can help researchers discover new treatments and cures faster. We hope to start similar partnerships with other rare disease communities in the future and accelerate timelines for the development of new therapies while building a strong community of peer support.”
PatientsLikeMe is the world’s largest integrated community, health management, and real-world data platform. On PatientsLikeMe, members can put their disease experiences in context and find answers to their questions. They can easily connect directly with members who have the same conditions, are experiencing the same symptoms, or have used similar treatments. Data generated by members themselves are systemically collected and quantified while also providing an environment for peer support and learning. The site enables members to monitor symptoms of their condition(s), share their disease experiences and treatment outcomes, and learn how to improve their care through peer-to-peer interactions. These data capture the complex temporality and competing influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person’s health. Everything members share empowers the community with personal agency, establishing PatientsLikeMe as a clinically robust resource with demonstrated impact, including more than 100 studies in peer-reviewed medical and scientific journals. To learn more about PatientsLikeMe, visit www.patientslikeme.com.
About the Tyrosinemia Society
The Tyrosinemia Society is a community of advocates, caregivers, and health professionals dedicated to educating and inspiring individuals to improve health outcomes and advocate for adults and children with Tyrosinemia and related disorders. 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. To learn more about the Tyrosinemia Society, visit www.tyrosinemia.org.
Tyrosinemia refers to a group of rare genetic disorders that prevent the breakdown of the amino acid tyrosine. Usually detected in infancy through newborn screening tests, tyrosinemia occurs in one out of every 50,000-100,000 births worldwide. Without treatment, tyrosinemia can lead to liver failure, but with early and lifelong condition management, people with tyrosinemia can develop normally and live healthy lives.