A place to find information, support, and connection
Discover strategies to help improve your
overall wellness while living with PNH.
Explore how your symptoms may be
impacting your quality of life.
Hear tips and tricks from
the PNH community.
Find support for building a
partnership with your doctor.
“Trust your body and take care of it but
reach out when something doesn't feel right.”
– Brianna, living with PNH
“I think it's important to
focus on the things we still CAN do
instead of solely thinking about the negatives. I also think it’s important to keep as much normalcy in our lives as we can...continue to do the things we value most if possible...”
– Leslie, living with PNH
“Symptoms ebb and flow; and
treatment does not necessarily equate to ‘feeling normal’ again.”
– Amanda, living with PNH
“PNH cannot take away who I really am.”
– Renee, living with PNH
“PNH may be rare and ‘invisible,’ but it’s very real. Despite all of that,
you can live and thrive with it.”
– Kristen, living with PNH