Lumiio

📣 Part 4 of our 5-week series: Making community knowledge accessible when patients need it most.

So far we've explored personalization, voice amplification, and recognition. This week tackles the question that keeps patients up at night: "Where do I find a doctor who actually understands my condition?"

The current reality? Patients spend months searching for knowledgeable specialists or endure appointments with providers unfamiliar with their condition.

Here's what changes when you tap into community wisdom: Interactive map-based tools allow members to locate providers who specialize in their condition. Community members add providers they've seen, rate their experience, and share detailed recommendations.

Individual searches become collective knowledge. Months of frustration become a few clicks to find expert care.

Key features that make this work:
→ Interactive map showing providers with condition-specific expertise
→ Patient recommendations and reviews from community members
→ Filter by location, specialty, and treatment approach
→ Community-contributed provider profiles and ratings

Your community already knows where the expert care is. The question is how to make that knowledge accessible.

Want to explore how this could work for your organization? Reach out to our team to learn more at [email protected]

Celebrating One Year of BetterLife FSHD !

One year ago, we launched the BetterLife Platform in partnership with the . This patient-powered platform was built to give individuals and families affected by Facioscapulohumeral Muscular Dystrophy (FSHD) a space to share their stories, track their health, and drive research forward. Since launching in 2024, the FSHD community has brought that vision to life with:

• Nearly 600 participants across 46 states

• Over 3,800 surveys completed

• A growing body of patient-reported data that is transforming understanding of FSHD

“It’s been exciting to build BetterLife with Lumiio and see this unique platform for the FSHD community become a trusted resource. Over the last year, feedback has been overwhelmingly positive, and users have told us that BetterLife is a valuable tool that they can rely on. We’re eager to see how the Research Gateway will build on this foundation to drive research forward.” - Hill, Strategic Director of the FSHD Society

This past year we also introduced the BetterLife FSHD Research Gateway, a tool that provides researchers, industry, and advocacy partners with secure access to updated, real-world patient data. By unlocking insights into health, function, and lived experience, the Gateway is helping to further accelerate trial design, care innovation, and scientific discovery.

These milestones come amid accelerating momentum in FSHD research, with promising therapies moving rapidly through trials and stronger global collaboration. The voices and experiences shared through BetterLife are fueling this progress, and together we’ll continue expanding access, empowering patients, and driving impact across research, care, and community