Maureen Meosky is the sister of Nell and Paul and recently moved to Boston to start her college career. She joins us today to give a family member’s perspective on rare disease and today’s hearing on Bill H.1934.

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. 

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.

Economists have been making lots of noise lately about what digital data ownership means.

Emily, an adult living with CF, talks about her changing relationship with exercise

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!

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.

Celeste talks about her experience traveling across the world while managing her cystic fibrosis.

Celeste writes about her experience with transitioning to college.

Christina, the newest member of the Folia team, shares her experience as a caregiver and what moved her to join the company.

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.

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!

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.

The future of precision care is up to you, and it’s easier to help than you think.

We are excited to share an exciting milestone: you have answered more than 100,000 questions!

The 100,000 questions represent a body of knowledge that was previously inaccessible to clinics and unable to be used by researchers to find a cure for cystic fibrosis. Your knowledge matters.

Let’s harness the power of your many observations and take the next big step toward data-driven care.

Helen is the mother of seven children, several of who have chronic conditions. One of her children happens to be Folia Health’s founder and CEO, Nell Meosky Luo. This inaugural vlog chronicles how Helen’s tracking of her oldest son’s home reported outcomes led to better care and was happened to provide the inspiration for the birth of this company.

Medicine’s Machine-Learning Craze Is Only Useful If It’s Built on a Decent Data

This winter, we’re excited to be speaking with caregivers and patients who are using Folia to advocate for themselves, and to move closer to the best possible care for themselves or their loved ones.

Sarah, our intern from the MIT Sloan School of Management, was kind enough to conduct this interview with Amy - a mom who is advocating for a methodical approach to managing her son’s CF.

Celeste is a busy, happy UT Austin student studying public health. She’s also a CF patient, and a Folia intern. In this post, Celeste shares her plans for a healthy, successful, and exciting 2019!