Advance PNH research from home and understand your health, all in one app.
If you have paroxysmal nocturnal hemoglobinuria (PNH), we want to learn from you. Join this study and tell us how your current treatment plan and symptoms affect you.
What to know:
6 months of tracking—no daily requirements, just check in at least once a week!
All participation through the Folia app—no clinic visits or new medications
Get compensated up to $190 total in gift cards of your choice
Participation is voluntary and you may leave at any time for any reason
The data you track in the Folia app for the study is yours to keep. It can be used to understand your health trends, and shared with your care team (if you want!)
Sign up today!
Download the Folia app and use the invite code on your flyer at registration.
Can’t find your invite code? Use code “PNH”
Not just a study.
Contribute to research, gain insight about your health.
As someone living with PNH, you may have a lot to manage. We collaborated with other Folia users who have PNH to make sure data you track in the app is not only useful for research, but also for you!
Over the course of the study, you’ll be building a personal health record in the Folia app, where you’ll be able to leverage your data to see trends in how you’re feeling and assess how your treatments may be working for you.
Plus, you can also expect:
A dedicated team of user support specialists who will host events to better learn how to design the app to better suit your needs
Tailored tips on how to leverage your PNH observations tracked in the Folia app to bring to your clinic appointments
Personalized reports and graphs to visualize your data
Community newsletters and virtual sessions to learn how others are navigating their PNH
At the end of the study, you will get a community insights report of what other participants with PNH tracked too!
Join us if the following apply to you!
An adult 18 years of age or older
A current US resident
Have received a clinical diagnosis of PNH
Study Activities Include:
(All activities completed in the Folia app!)
