Folia Health: The Home-Reported Outcomes Company

We had a great experience at this year’s NORD Breakthrough Summit in DC. At almost every session, we found patient advocates, drug developers, and FDA regulatory experts encouraging the development of methods that accurately reflect real-world patient outcomes and accelerate approvals of truly life-changing therapies.  We’re so encouraged by this emphasis on patient preference measurement in early drug development and the appetite to collect comprehensive data that reflects how patients actually experience their condition, something our Folia research partners continue to champion. Excited for even more opportunities to design and collaborate on these observational research endeavors - in the rare disease community and beyond! #NORDSummit

🚨 🌱FOLIA POSTER ALERT: Discover how patients are taking the lead to redefine the design and measurement priorities for real-world outcomes research! Folia's collaboration with the PNH community to capture more meaningful outcomes, experiences, therapy impact, and HRQoL is being presented at #NORDSummit next week. Join us in DC and connect with Amanda Healey and Samantha McStocker about our innovative Home Reported Outcomes (HRO) approach. #HEOR #RWE #PNH #ISPEP #ISPOR #PatientExperience #PatientReportedOutcomes #PatientEngagement #PNHAwareness2024 #RareDisease

🚨 🌱FOLIA POSTER ALERT: Discover how patients are taking the lead to redefine the design and measurement priorities for real-world outcomes research! Folia's collaboration with the PNH community to capture more meaningful outcomes, experiences, therapy impact, and HRQoL is being presented at #NORDSummit next week. Join us in DC and connect with Amanda Healey and Samantha McStocker about our innovative Home Reported Outcomes (HRO) approach. #HEOR #RWE #PNH #ISPEP #ISPOR #PatientExperience #PatientReportedOutcomes #PatientEngagement #PNHAwareness2024 #RareDisease

We're #hiring a new Product Marketing Associate to grow and build awareness how we support our condition communities and Folia users. Spread the word!

🚨🌱FOLIA POSTER ALERT: At the recent #WeekInRARE conference hosted by Global Genes, the Folia team unveiled findings of additional measurement concepts derived from Home Reported Outcomes (HROs) across 5 inflammatory conditions. These concepts were in addition to those that are typically captured by disease specific PRO scales commonly administered in clinical trial research, making it possible for a much broader range of outcomes measurement in complex and rare diseases without significantly impacting responder burden. Download the poster here: https://hubs.ly/Q02SDWjK0

Last week’s conferences like Global Genes Week in RARE highlighted some powerful ways patient data and collaboration are driving innovation in rare disease research and bringing impactful therapies to market. At Folia, we’re energized and proud to contribute to this research ecosystem through our model in a few ways: ✅ - Folia can transform incredible useful patient observations into formalized, actionable datasets—providing a pathway that turns anecdotal info into confirmatory evidence. ⏰ - Our platform captures real-time, home-reported flares on fatigue, pain, and more - filling in gaps of clinical records and ePRO assessments. 🤝 - At Folia, we serve as a data connector by facilitating collaborations between patients, clinicians, researchers, and families in the design and dissemination of study insights. 🏗 - All of our research opportunities are designed alongside patient partners. The Folia platform supports the ability for patients to leverage individual-level data to receive better care, while also producing publication-grade aggregate datasets ready for regulatory review. If you're interested in learning more about how this works, reach out to us! https://hubs.ly/Q02QBjrL0 

Rejuvenated after #NACFC last week. It was wonderful to see old friends like Erin Moore and Breck Gamel, watch our fabulous HERO-2 Study team present exciting preliminary findings on the safety of withdrawal from other therapies when on Trikafta, and strategize on the next frontiers of #patientcenteredresearch in #cysticfibrosis. Here's to 2025! #untilitsdone

We're #hiring a new Product Associate to design and grow the ways in which we support patients and caregivers who rely on Folia for research and personal use. If you're motivated to make healthcare easier for people living with complex conditions - you're probably a great fit. Link in description to apply!

We're at Global Genes Week in RARE in Kansas City tomorrow presenting: "Are we measuring what matters to patients? A narrative and scoping review of flare-up symptoms tracked in an app-based platform compared to clinical endpoints in complex and rare conditions" Find our talk at the poster hall tomorrow 9/26 from 1:30pm-1:45pm and learn about what types of outcomes current Folia users are prioritizing in their condition communities compared to what is being measured in trials. #weekinRARE #sharemyRARE

Imagine a world where home-reported outcomes can pave the way for consistent, patient-centered, data-driven care—transforming the lives of individuals across all conditions, from cancer to immunology and beyond. We're at World Medical Innovation Forum in Boston this week to collaborate and learn from clinical leaders to turn this vision into a reality. If you're in Boston for WMIF, we'd love to connect! Visit https://lnkd.in/eY7zdbha and we'll find time together.