Folia Health: The Home-Reported Outcomes Company

Spring is (almost) here and Pharmageddon by Impatient Health is around the corner! We’re thrilled to see Nell Meosky Luo on the Day 1 agenda. She will be speaking on how patient-driven insights can shape smarter, more impactful drug development. Want to meet up in Philly? Reach out at [email protected]

"What support do you need for research to be truly useful to you?" This is the primary question we ask when collaborating with patients, caregivers, and clinicians to design our in-app research studies. Folia has shown it's possible to build real-world research to support real-life. Here's a bit of what our team has learned: ?? Patients want to contribute their experiences to research, especially when they know it informs better, more targeted therapies. ?? When research participation also leads to more precise, personalized care, it’s a win-win for our clinical partners and patient communities. ?? Support goes beyond data collection. Patients seek community and knowledge-sharing, which is why Folia goes beyond research design to host clinician expert-led webinars for patients who can't easily access specialty clinics, share community insight reports so patients can learn from each other’s experiences, empower patients as thought leaders through blogs - and more. Build with us! [email protected]

Folia is supporting the rare and chronic disease community during National Kidney Month and beyond. If you are a patient, caregiver, advocate, researcher, or clinician, come see our latest research and programming at NephCure Patient Summit and the National Kidney Foundation Spring Clinical Meeting! To schedule time with us in NYC or Boston, reach out to [email protected]

Folia has partnered with Novartis Pharmaceuticals to leverage the home-reported outcomes of individuals living with IgA Nephropathy (IgAN) in a 6-month observational research opportunity. The comprehensive insights generated from Folia will support patients' individual care journey and contribute to novel real-world evidence on the evolving IgAN treatment landscape. Alongside our growing rare hematology and kidney disease communities, we are proud to continue to collaborate with Novartis on investing in this patient-driven ecosystem. Questions? Contact us at [email protected] To learn more about this groundbreaking collaboration: https://lnkd.in/gJP23ipB

Big news! ?? We’re partnering with Vivo Infusion?’s nearly 100 clinic sites across the U.S. to share Folia with their patients as a resource for personal use, community knowledge gathering, and research. Why are we so excited about this? Vivo Infusion is deeply committed to the patient experience and that resonates with everything we stand for. At Folia, we believe what matters to patients, matters to research. Partnering with an organization that prioritizes patient experience as much as we do just makes sense. For many people living with chronic illnesses, infusions are a lifeline, whether they have PNH, sickle cell disease, rare kidney diseases (like IgAN or C3G), or autoimmune conditions such as lupus, rheumatoid arthritis, Sj?gren’s disease, and more. We know firsthand that tracking what you are experiencing, especially infusion treatments, can lead to better, more precise care. Thank you Vivo Infusion for supporting the patient journey. March is Kidney Awareness Month and Autoimmune Disease Awareness Month. Stay tuned for more exciting updates on our work supporting not only these condition communities, but so many others.

It’s PNH Awareness Week! What does support for this community look like? At Folia, supporting individuals with paroxysmal nocturnal hemoglobinuria (PNH) means partnering with patients and clinicians to ensure our platform collects their most important experiences. From everyday symptom tracking that allows them to "set-and-forget" routine moments, to documenting an infusion treatment's impact on daily life - we are committed to amplifying PNH patients' ability to document meaningful changes in their condition. Why does this matter? By enabling this type of data collection, patients contribute to a comprehensive dataset that reflects their real-world experiences with PNH. This serves as a powerful tool for: ?? Patients managing their own care, and bringing to clinicians to make informed care decisions. ?? Support group members (including caregivers) who are looking to better understand if what they are observing is n-of-1, or commonly experienced ?? Life science researchers who are developing more effective therapies and improving access to treatment options Our commitment to these collaborations extends well beyond PNH Awareness Week. Stay tuned for more exciting partnerships!

Folia?had the opportunity to attend?Rare Disease Day this past?Saturday at the Boston Public Library, hosted by?National Organization for Rare Disorders. It was a powerful reminder of our work as we met with individuals and caregivers living with rare diseases, and connected with others like us who are working diligently to drive meaningful change for this community. We cannot wait to continue to collaborate! Rare Disease Day may be over, but March is a busy month for us as we continue to empower the rare and chronic illness communities with our research programs —be sure to follow along for more! #RareDiseaseDay #ShowYourStripes

Friday's announcement postponing the annual Rare Disease Day meeting by the FDA/NIH is a stark reminder of the constant external hurdles our rare disease community faces. There’s simply no time to delay incorporating direct patient and caregiver perspectives into the development and approval of life-saving therapies (so inspired by the amazing EveryLife Foundation for Rare Diseases for still continuing their advocacy event in Washington, DC this week despite this setback). It also underscores the critical importance to continuously leverage the rapidly expanding body of patient-generated data reflecting the real-world priorities of rare disease patients and families, once nearly impossible to collect but now growing exponentially. We know firsthand that drug development decisions can now be anchored directly to this type of evidence - and we owe the rare community to push forward on this despite the delays. #RareDiseaseDay

Is there a research solution that comprehensively captures the full individual disease experience, treatment impact, QoL, and is engaging to participants? YES! HROs include: - Full Rx & OTC utilization insights (including reasons for skipping, switching, stopping therapy) - Longitudinal changes to most bothersome symptoms - PRO scales - Flare event characterization from in the moment data capture (treatments, symptoms, triggers, HRQoL) - AND MORE Curious about HROs? Connect with Folia to find out how we generate amazing evidence insights in your target disease condition: https://hubs.ly/Q036qqWQ0 #HomeReportedOutcomes #heor #rwe #MeasureWhatMatters

Need to better understand the impact of home managed flare events to differentiate your therapy? What treatments do patients use to resolve flaring symptoms (Rx & OTC)? How do these events impact their daily lives and QoL? Folia is uniquely answering all of these questions for our research partners developing new therapies for inflammatory diseases. HROs -> measure what matters most to patients! Want to learn more? https://hubs.ly/Q035J8Cm0