TREND: The Online Community Making a Difference
Listen now
Description
When Maria Picone’s daughter was diagnosed with Prader-Willi Syndrome (PWS), she turned to the internet for answers.     What she found was an online community of caregivers sharing their experiences with PWS, giving her comfort and direction with what to do about her daughter’s rare disease. It also spurred her and her husband to create TREND Community, an online platform for caregivers of rare diseases to not only share their experiences, but also make positive contributions to scientific literature.     Join us as we discuss the philosophy of TREND Community, how it transforms general discussions into real-world clinical research, how collaboration drives their progress, what’s next for TREND, and what you can do to help advance their mission.     Show Notes   Trend Community - Impact Through Insights Trend Community Report on Identifying Mental Health Challenges Experienced by Caregivers in Rare Disease Communities: A Social Media Analysis Charles River | Rare Disease The Disruptors: Innovation in Drug Discovery
More Episodes
At Mission Therapeutics, Sarah Almond serves as their Head of Pharmacology, but she wears many hats to help develop potential treatments for neurodegenerative conditions.        Their main area of focus centers around research into deubiquitinating enzymes (DUBs), which may impact...
Published 04/16/24
Published 04/16/24
When he founded Cure Rare Disease in 2018, Rich Horgan was primarily focused on finding a treatment for his younger brother Terry, who had an ultra-rare form of Duchenne Muscular Dystrophy (DMD).     Suffering from a disease that has no cure, Terry served as a “selfless, brave, and courageous”...
Published 02/20/24