Community and Support

PNH Resources

You’re not alone on your journey. There are a lot of great resources to keep you informed and connected to experts, others living with PNH, and the caregivers of people with PNH.

OneSource®

This complimentary program offers customized support including disease information, community resources, and ongoing encouragement for patients living with PNH and their caregivers. No matter where you are in your journey, OneSource and the OneSource Case Managers can help.

Get started with OneSource

External Resources

National Organization for Rare Disorders (NORD®)

For everything from helping patients access medication assistance, to hosting meetings for people with PNH and their families, to sharing real stories to spread awareness, the National Organization for Rare Disorders is ready to help.

Find out how they can help you

Aplastic Anemia & MDS International Foundation (AA & MDSIF)

A nonprofit resource for assistance, advocacy, and support for patients living with multiple diseases, including PNH.

I want to learn more

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Printable brochures

Print and use these free educational resources for more information and during your PNH journey.

Download more materials
 
Manual/book

PNH glossary

Did you read or hear a term and aren’t sure what it means? Check the glossary for more context and definition.

Know your disease
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Patient viewpoints

Nobody knows PNH better than people who live with it. Take a look at these videos featuring Scott, Batina, Victor, and their caregivers and learn their stories.

Hear from people like you

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