Paroxysmal Nocturnal Hemoglobinuria (PNH)

AAMDSIF advocates for and invests in collaborative research to accelerate the discovery of better treatments and cures for bone marrow failure disorders.  

AAMDSIF Research Grants

Caring for Yourself

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Therapies

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Bone Marrow Transplants

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Clinical Trials

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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.

You are not alone. The AAMDSIF HelpLine has trained and compassionate information specialists ready to answer your questions and provide the support you need. To speak with an information specialist, please call (800) 747-2820, option 2, or email help@aamds.org.

Caregiver Stress

Don’t deny or ignore the fact that being a caregiver will have an effect on you.

Recent Diagnosis

Parents of children newly diagnosed with a bone marrow failure bone marrow failure: A condition that occurs when the bone marrow s

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.

Is it true to say that many people don’t realize that they are caregivers?

When bone marrow bone marrow: The soft, spongy tissue inside most bones.

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 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.