Helping you help your loved one

As a caregiver to someone with PNH, you can be a great source of encouragement and support. It's important for you to learn as much as you can about PNH and be ready to offer help, empathy, and understanding as needed. The following are some steps you can take to help your loved one.

Order your Caregiver’s Guide to PNH

This 4-chapter book provides useful information for caregivers of people living with PNH. It includes:

Navigating daily life with PNH
Tips for getting organized
Dealing with caregiver stress and ways to avoid burnout
Helpful resources

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Other ways you can help

Encourage your loved one to:

Attend PNH events. Also be sure to check events that are focused on caregivers
Connect with others living with PNH
Take advantage of complimentary resources like OneSource™ and others found on this site
See the doctor regularly
Track symptoms and lab results
Prepare for doctor visits with questions and concerns