Folia Health: The Home-Reported Outcomes Company

"To actually be able to make good decisions and good recommendations for people using an AI algorithm, you need much higher quality and individual level data.” Folia CEO Nell Meosky Luo joined the ThinkData Podcast with 🚀Alex Hutchings to talk the origin of Folia, the gaps we see in traditional ePRO approaches, and why structured, longitudinal home-reported data is critical for both clinical insights and the future of AI in healthcare.

It was a great #KidneyWk in Houston, TX with American Society of Nephrology! The Folia Health team was on-site to present early baseline findings from two home-reported outcomes (HRO) studies in IgAN and C3G, conducted in collaboration with Novartis. We were also honored to celebrate 25 years of NephCure’s impactful advocacy and community leadership! The rare renal space has seen tremendous progress in recent years. At Folia, we’re proud to contribute by designing research that helps participants capture how new treatments affect their lived experience, not just their lab values. Through HRO programs, we can re-center research on what matters most to patients and transform real-world experiences into structured, actionable data that strengthen publications, trial design, and strategic discussions. Look for us this week at #ISPOREurope!

The Folia team is back on the road! In the coming days we’ll be attending two major conferences, and we’d love to connect with you! American Society of Nephrology (ASN) Kidney Week 🗓️ November 6–9 | Houston, TX We’ll be presenting exciting early insights from our Home-Reported Outcomes (HROs) programs: IgAN: Baseline Characteristics and Treatment Satisfaction of Patients Enrolled in Immunoglobulin A Nephropathy (IgAN) Bridge: Interim Results From a Home-Reported Outcomes Study C3G: Baseline Characteristics and Treatment Satisfaction of Patients Enrolled in C3 Glomerulopathy (C3G) Connect: Interim Results From a Home-Reported Outcomes Study ISPOR Europe 2025 🗓️ November 9–12 | Glasgow, Scotland We’ll be highlighting patient perspectives from our study feasibility work in breast cancer: HR+/HER2- Breast Cancer: Patient Perspectives on Disease Experiences and Value of Real-Time Self-Reported Symptom and Treatment Monitoring in Locally Advanced and Metastatic Breast Cancer Several members of our team will be onsite, if you’ll be attending ASN or ISPOR EU, we’d love to connect to discuss how a home-reported outcomes program can fit into and benefit your evidence strategy! Send us a message at partnerships@foliahealth.com. Follow along for updates from the conference floor and key takeaways from a busy week! #PatientReportedOutcomes #RealWorldData #HealthInnovation #ASN2025 #ISPOREurope #FoliaHealth

A few energizing days at the NORD Breakthrough Summit, where Folia shared three poster presentations in IgAN, C3G, and PNH. This year's summit challenged us (in the best way) to think about what real partnership with patients can and should look like. The message was clear: Patients must be partners in clinical trial and drug development study design. Our Folia team left feeling invigorated by the work we're doing, collaborating directly with patients and caregivers to capture home-reported outcomes; and exploring how granular, representative insights can drive discovery (not just inclusion) in drug development. We are grateful that National Organization for Rare Disorders Summit keeps us reminded and energized that there is still more to do for our rare disease communities!

We’re just weeks away from heading to Washington, D.C. for the 2025 National Organization for Rare Disorders (NORD) Breakthrough Summit! We’re proud to continue our streak of presentations at NORD, this year with posters highlighting three ongoing real-world research collaborations with Novartis and the IgAN and PNH communities: 🔹 Assessing Alignment Between Standardized Patient-Reported Outcomes and Home-Reported Outcomes in IgAN 🔹 Stratifying Home-Reported Outcomes by Time Since Diagnosis in IgAN 🔹 Preliminary Symptom and Treatment Data From an App-Based Study on PNH Folia is committed to empowering life science partners and condition communities with data-driven, patient-driven insights that help fill crucial evidence gaps and improve care in rare disease. To connect with us ahead of the Summit, reach out at partnerships@foliahealth.com.

In the last 6 years, we went from conceptualizing how machine learning can improve healthcare to people actually replacing "Dr. Google" with ChatGPT. Our founder Nell Meosky Luo wrote about what we need for AI to be effective back in 2019, and today, it's more relevant than ever. Read more ⬇️

Nell is speaking at Fierce Biotech Week! She’ll be on the panel on Oct. 8 entitled “From Formation to Exit – Legal Strategy Across the Biotech Lifecycle” sharing how strong foundations fuel impactful partnerships and growth in biopharma. If you’re attending, don’t miss this conversation on what it takes to move science forward faster. Reach out at partnerships@foliahealth.com if you'd like to connect. #FierceBiotechWeek #Biopharma #LifeSciences

We’re proud to announce our $10.5M Series A, led by S3 Ventures with Crosslink Capital and Create Health Ventures. Nine years ago, we started with a simple belief: people know their health better than anyone, and their insights are crucial to driving great healthcare. Today, this belief is at the core of every feature we build, every partnership we cultivate, and every research study we design. Our team has transformed a simple tracking tool into a bridge connecting patients, researchers, and clinicians. We’ve proven that patients are the underutilized healthcare experts we need for better research in a handful of chronic and rare conditions, and now we get to scale. More conditions. More research studies. More insights that prove healthcare works better when patients lead. Here’s why we’re changing healthcare from the inside out: https://lnkd.in/gbZajt6E

September is National Sickle Cell Awareness Month. As the month comes to a close, Folia Health remains dedicated to supporting the needs of SCD warriors and advancing research in this community.We are honored to join Westchester Sickle Cell Outreach Inc. at their 1st Annual Keeping the Torch Lit Sickle Cell Disease Symposium, taking place October 2–3 in the Bronx, NY. Our Director of Research, Amanda Healey, will be sharing Folia’s commitment to elevating patient voices and contributing to research that makes a difference. If you’re a patient, provider, or research partner attending, we’d love to connect. Reach out at research@foliahealth.com .

The Folia team is continuing to grow! We are seeking a Boston-based Senior Research Manager with previous program management experience to oversee a portfolio of innovative real-world evidence research initiatives in rare conditions. Learn more and apply at the link below:  https://lnkd.in/einJvsUb