The world’s largest integrated community, health management, and real- world data platform PatientsLikeMe (PLM) announced today it is partnering with The Huntington’s Disease Society of America to launch a virtual community for those living with Huntington’s disease (HD) and for those caring for individuals living with HD. This tailored community will focus on education and peer-to-peer knowledge-sharing. This community will serve as a catalyst to expand researchers’ knowledge of the condition through the analysis of patient-generated data. This collaboration will support patients and families grappling with HD 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, PatientsLikeMe and The Huntington’s Disease Society of America aspire to improve health outcomes and quality of life across the HD community.
PatientsLikeMe’s mission is to improve the lives of patients through new knowledge derived from shared real-world experiences and outcomes. The Huntington’s Disease Society of America’s mission is to improve the lives of everyone affected by Huntington’s disease and their families.
“Partnering with PatientsLikeMe is an exciting new step in our work to help families affected by Huntington’s disease come together to support one another, find vital resources and share their journeys so that care for HD improves as quickly as possible,” said Louise Vetter, President & CEO of The Huntington’s Disease Society of America.
Brad Hornback, Lead Community Manager at PatientsLikeMe, remarked: “We are thrilled to partner with The Huntington’s Disease Society of America. PLM’s vibrant community and robust health tracking tools will offer increased support to help individuals navigate their HD journey.”
“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 evidence while bringing focus to Huntington’s disease,” said Dr. Kate Burke, Senior Medical Advisor for PatientsLikeMe. “As we involve more and more individuals in research and empower them to share their stories and experience with HD, we can help researchers discover new treatments and cures faster.”
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 Huntington’s Disease Society of America
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families. To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America visit https://hdsa.org/ or call (800) 345-HDSA.
About Huntington’s Disease
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having, ALS, Parkinson’s and Alzheimer’s – simultaneously.