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Peer Support Network

Connecting with other patients and families can be a powerful and uplifting experience. Our networks let you learn from others, share your journey, get and give support and make new friends. You have the option of connecting on a one-to-one basis or with a group. You also choose the way you prefer to interact - by phone, in person or online.

Caregiving Basics

The National Family Caregivers Association's Director of Caregiver Wellness Programs, Jane Meier Hamilton, RN, MSN, has been a nurse for 40 years and family caregiver for 20 years. In a recent interview, she offered advice for family caregivers.

PNH Diagnosis

PNH is a very rare disease. Many doctors have never seen a case of it. So people with PNH may have symptoms for several years before getting a correct diagnosis. Many tests and tools are used to diagnose PNH and find out how severe it is.

PNH Symptoms

PNH can cause variety of symptoms. These can vary greatly from person to person. You may have many symptoms, or just one or two. And you may get a new symptom at any point in the course of your illness. The severity and number of symptoms are often related to the size of your PNH