BOSTON–(COMMERCIAL THREAD) – The world’s largest integrated community, health management and real data platform, PatientsLikeMe (PLM) today announced its partnership with the Huntington’s Disease Society of America to launch a virtual community for people living with Huntington’s disease (HD) and for those caring for people living with HD. This tailor-made community will focus on education and knowledge sharing among peers. This community will serve as a catalyst to expand researchers’ knowledge of the disease through analysis of patient-generated data. This collaboration will support patients and families struggling with HD and allow them to make their voices heard, to learn from others who have had the same experiences as them and to accelerate the development of treatments and cures through the participation in research. Through this partnership, PatientsLikeMe and the Huntington’s Disease Society of America aspire to improve health outcomes and quality of life in the HD community.
PatientsLikeMe’s mission is to improve the lives of patients through new knowledge derived from experiences and results shared in the real world. The mission of the Huntington’s Disease Society of America is to improve the lives of all people affected by Huntington’s disease and their families.
“The partnership with PatientsLikeMe is an exciting new step in our work to help families affected by Huntington’s disease come together to support each other, find vital resources and share their journeys so that HD care is better. as quickly as possible, ”said Louise Vetter, President & CEO of the Huntington’s Disease Society of America.
Brad Hornback, Chief Community Officer at PatientsLikeMe, said, “We are delighted to partner with the Huntington’s Disease Society of America. PLM’s vibrant community and robust health tracking tools will provide 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 continue our mission of raising the voice of patients to the level of evidence while focusing on Huntington’s disease,” said said Dr Kate Burke, Senior Medical Advisor for PatientsLikeMe. “As we involve more and more people in research and empower them to share their stories and experiences with HD, we can help researchers discover new treatments and cures faster. ”
PatientsLikeMe is the world’s largest integrated community, healthcare management, and real-world data platform. On PatientsLikeMe, members can put their illness experience into context and find answers to their questions. They can easily come into direct contact with limbs that have the same conditions, have the same symptoms, or have used similar treatments. Data generated by the members themselves is systematically collected and quantified while also providing an environment for peer support and learning. The site allows members to monitor symptoms of their condition (s), share their experiences with the disease and the results of their treatment, and learn how to improve their care through peer interactions. These data capture the complex temporality and competing influences of different life choices, socio-demographics, conditions and treatments on a person’s health. Everything members share empowers the community for personal action, making PatientsLikeMe a clinically sound resource with demonstrated impact, including over 100 studies in peer-reviewed medical and scientific journals. To learn more about PatientsLikeMe, visit www.patientslikeme.com.
About the American Huntington’s Disease Society
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 global leader in providing help 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 disease that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their first few years of work and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the defective 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 disease and Alzheimer’s disease – simultaneously.