Recognizing Rare Disease Day
In recognition of Rare Disease Day today, we reflect on the need to continue to advance research in a patient-driven way.
With 600+ conditions represented in our active user base, many of which are considered “rare”, Folia Health is proud to partner with sponsors, researchers, advocacy organizations, and patient communities in our mission to transform lived experiences into valuable insights for more effective research and care. Below is a selection of some of our relevant rare disease resources. Download complimentary versions of rare disease research white papers and symposia presentations, and discover user stories on our Blog.
Also, hop on over to our socials - Facebook, Instagram, Twitter, LinkedIn - and check out our users, who are showing their stripes and sharing their strength with #Folia4RareDisease
What Matters Most to Patients, Matters Most to Research™
Measuring Burden:
Patient-driven therapeutic development starts with a comprehensive understanding of disease burden for patients and caregivers. Discover how Home Reported Outcomes enable more effective burden research.
New Endpoints:
Learn more about the emerging approach of endpoint individualization to expedite and strengthen rare disease drug development initiatives.
A step closer to Patient-Focused Drug Development
Folia Health CEO’s presentation at the NORD Rare Summit in 2022: “We are paying very close attention to what individuals need from new therapies, and making sure that when those therapies are assessed, we are assessing them in a way that directly relates to what patients and caregivers require of therapies.”
User Stories on our Blog
Discover our Blog, and read posts featuring stories from our caregiver and patient users: