BetterLife FSHD: New Digital Health Platform Launched for Facioscapulohumeral Muscular Dystrophy Across United States

Lumiio is celebrating the launch of the BetterLife FSHD, a digital health platform, in partnership with the FSHD Society. Powered by Lumiio’s advanced customizable platform technology, BetterLife FSHD will provide an important opportunity for patients to unlock personalized disease insights, for researchers to collect decision-grade real-world data (RWD), and for clinicians to better understand standards of care and patient outcomes. The platform is the first of its kind in North America, with a focus to better understand and treat the estimated 1 in 8,000 people worldwide who are impacted by FSHD. 

BetterLife FSHD was launched after one month of Lumiio and the FSHD Society working together and has already seen impressive uptake within the FSHD community. BetterLife FSHD’s rapid development and launch was key in helping the FSHD Society meet its goals of empowering patients across the country by providing tools to track symptoms, find personalized information and insights, and actively contribute to research.  

“Our collaboration with Lumiio in building BetterLife FSHD has set the stage for advancing research and providing new tools for the FSHD community,” says Amanda Hill, Senior Director of Research and Care at the FSHD Society. “Lumiio’s platform will allow us to integrate real-world data with support tools, offering researchers and clinicians deeper insights into the disease. Together, we aim to fast-track therapeutic development and enhance personalized care for people living with FSHD.” 

The platform will help demonstrate the important role RWD can play in unlocking disease insights and accelerating therapeutic development for rare and underserved diseases.  

Learn more about BetterLife FSHD: https://betterlifefshd.org