Share your voice

What we’ve heard so far

We’ve been gathering your feedback for the past year. Here’s what you said and how it helped shape new resources:

  • What we heard

    For those who wanted help engaging in everyday life:
    50%
    would like help
    managing
    day-to-day tasks
  • What we heard

    For those who wanted help communicating:
    55%
    would like more tools
    to help explain PNH
    to others
    and
  • What we heard

    33%
    would like better
    communication
    with your doctor
  • What we heard

    For those who wanted help maintaining a healthy mindset:
    33%
    would like support for
    mental wellness

      Tools your feedback helped create

    • Emotional health tools and resources, created in partnership with Dr. Guy Winch

You'd like:

Easily understandable
information on PNH

52%

Ideas on improving
communication
with your doctor/family

63%

Tools to help
explain PNH
to others

49%

Stories from
people
with PNH

60%

Resources to help manage daily life with PNH

47%

Ideas from
experts

54%

Helpful
videos

51%