The Folia Blog
Coming together over Corona
Paul, an adult living with CVID and the original inspiration for Folia, shares how the self-quarantine has brought him opportunity for connection.
Figuring Out How to Keep Bennett Safe Through the Coronavirus
Breck, a CF mom, shares practical tips on navigating coronavirus with an underlying health condition and surviving a self quarantine.
Giving back and telling the whole story with Folia Home Reported Outcomes (HROs)
Lynsey, mom to 18-month-old Landon, shares how tracking on Folia ends each day with a boost of positivity, enables her to precisely tell their whole story, and provides a way to give back to the CF community. She is hopeful about the future of healthcare which taps into the perspectives of patients and caregivers at home.
Grounded in understanding my chronic condition
Anna is a student researcher at Tufts University, an aspiring physician, and an adult living with primary immunodeficiency. In this blog, Anna shares with Rebekah what has grounded her as she navigates life with a recent diagnosis of her specific mutation.
New Name, New Routine, and a New Village of Support in the PI Community
Ashley is mom to Finn, who was diagnosed with PI in April 2019. In this blog post, she shares with Rebekah her initial reactions to Finn’s diagnosis, drive to the appointments, Infusion Thursdays, and the village of support.
Navigating acute episodes as a caregiver
Christina, Head of Growth of Folia Health, shares about her family’s recent hospitalization.
Tracking in Sickness and Health
Breck, a CF mom and author of In It for Bennett: Our Journey with Cystic Fibrosis, has been part of the Folia community since June 2018. In this blog post, she shares with Rebekah their one-year update, advice for new families, and tracking in sickness and health.
The Road to Data Dividends
We proudly announce that today we become, to our knowledge, the very first digital health company to recognize the enormous contributions that patients and caregivers can make to our collective healthcare dataset through a data dividend.
What we talk about when we talk about data ownership
Economists have been making lots of noise lately about what digital data ownership means.
The Importance of Exercise with CF
Emily, an adult living with CF, talks about her changing relationship with exercise
Back to School: College and Grad School Edition
Paul, an adult with PI, draws from his experience attending college and starting law school to share six great tips for navigating higher education while managing a condition. Best of luck in your law school adventure, Paul!
Calling all plasma-donating superheroes
Earlier this month, reports began to circulate on the mounting crisis of immunoglobulin shortages. We’ve heard from some of our PI users that IG supplies have been rationed. The Immune Deficiency Foundation released this plea to hospital-based providers and prescribers.
Studying Abroad with Cystic Fibrosis
Celeste talks about her experience traveling across the world while managing her cystic fibrosis.
Celeste's Transition to College
Celeste writes about her experience with transitioning to college.
Why I joined Folia
Christina, the newest member of the Folia team, shares her experience as a caregiver and what moved her to join the company.
4 Foods to Help You Thrive This Summer
We know that digestive health is an important part of managing many chronic conditions. In fact, more than half of our users track symptoms and behaviors related to their diet! Here at Folia, our team has been loving this summer weather and all the fun that accompanies these warmer months. And if you’re managing a chronic condition, there’s no reason you can’t either.
Ron, on determination, faith, and following his path
We are excited to feature Ron’s story of how his cystic fibrosis diagnosis in his 40s answered some questions he had his whole life. Thank you, Ron, for inspiring us with your message of positivity and for your service to our country and your community!
Why we don’t like the term “treatment adherence”
At Folia, we don’t like the term “treatment adherence.” Yes, it’s a standard term across the healthcare ecosystem, and is definitely an improvement on the old “treatment compliance.” However, the concept of adherence still suggests a paternalistic line of thinking, that people who don’t follow prescribed treatment plans must be irresponsible, lazy, defiant, or indifferent.
How you can help CF research - right now
The future of precision care is up to you, and it’s easier to help than you think.