Support at your fingertips
Being a part of a community means you never have to go it alone. That’s true whether you are a person living with PNH or you love someone who is. A rare disease affects more than just the person who lives with it, and spouses, children, employers and friends can all be part of your support team.
While you may not have come across someone else with PNH in your neighborhood, there are ways to connect with the larger community and find supportive resources as you navigate your everyday.
Here are just a few:
Apellis Community Support
AAMDSIF Community advocacy organization
Rediscover the joy of "yes"
PNH community stories
Tools for emotional health
Strategies for partnering with your doctor
Tips to help navigate family life
Resources for family and friends
Glossary of terms