These thick binders show only a fraction of notes that Nell's mom has been keeping for her brother's medical condition, CVID, for the past 26 years.
The problem is that these notes are hard to use. Imagine the doctor reading every single page, organizing her mom's detailed observations, and connecting the important dots for a personal, precise treatment plan. Her observations, as well as yours, have an untapped potential. Nell founded Folia 5 years ago with the dream that everyone living with a complex disease could get super precise, personalized care - if only their doctors could read their minds and notebooks!
The core idea behind Folia is that instead of writing what you notice in notebooks, you can collect the same information by responding to easy-to-answer questions. Folia organizes the information that you notice and makes it easy to use - for both your doctor, and for researchers looking to learn more about your condition.
To see how it works: Check out the attached Folia Intro Guide.
Here at Folia, we believe your knowledge matters. In fact, your observations are so powerful, they can have a huge impact on the care you receive.
Nell's younger brother has CVID, an immunodeficiency. Over the course of 20+ years, her mom has become an honorary immunologist - with bookcases full of journals detailing her brother's symptoms and treatments.
Her family's journey with healthcare has been complicated, and she ultimately decided to go to Yale to study chronic disease. While there, she recognized a fundamental hole in our ability to improve the treatments available for many chronic conditions: there isn't enough data on how well various treatments work for specific types of patients.
Eventually, she put two and two together, and recognized the data she was looking for to fill this gap does in fact exist - it was stored in years worth of experiences, thoughts, and notes from her mom!
Nell put out an ad for a co-founder - someone with coding experience and a first-hand understanding of what it's like to deal with a chronic condition. While looking for an opportunity to work on something meaningful and as a father to a child with down syndrome, Dan was drawn to the idea of improving quality of care by empowering other families.
Today, Nell and Dan are joined by a team of passionate individuals driven by various experiences. As a whole, we strive to make it easier for patients and caregivers to better understand and advocate for themselves and others in healthcare settings.