Your opinion matters

What we’re hearing

The resources found on this website were just a first step, but we’d like to do more. The results of this poll will help shape what comes next.

We’re still listening, but here’s what we’ve heard so far. We’ll be updating these results regularly, so check back often!

You'd like:

Help maintaining a
healthy mindset

72%

Tips to manage
everyday life

70%

Tools to help
communicate

67%

Resources on
a website

76%

Helpful
videos

73%

Ideas from
people with PNH

85%

Ideas from
experts

67%