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Voices from your PNH community
Voices from your PNH community
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PNH perspectives
Learn more about sub-optimal treatment response and how it's managed through the experiences of real patients and physicians.
When is it a sign of a sub-optimal treatment response?
Fatigue, low hemoglobin and regular blood transfusions are just a few of the signs and symptoms of a sub-optimal response to your current treatment.
When is it a sign of a sub-optimal treatment response?
Fatigue, low hemoglobin and regular blood transfusions are just a few of the signs and symptoms of a sub-optimal response to your current treatment.
How do you talk to your doctor about a suspected sub-optimal treatment response?
How you feel is as important as your blood test results when it comes to recognizing a sub-optimal response.
How do you talk to your doctor about a suspected sub-optimal treatment response?
How you feel is as important as your blood test results when it comes to recognizing a sub-optimal response.
What are the treatment options for a sub-optimal response?
Medications used to treat a sub-optimal response work differently than those used as a first treatment.
What are the treatment options for a sub-optimal response?
Medications used to treat a sub-optimal response work differently than those used as a first treatment.
Hear how Catherine navigated a sub-optimal treatment response
When Catherine suspected a sub-optimal treatment response, she learned everything she could about PNH in order to advocate for a different treatment.
Hear how Catherine navigated a sub-optimal treatment response
When Catherine suspected a sub-optimal treatment response, she learned everything she could about PNH in order to advocate for a different treatment.
See how Barry advocated for himself after his PNH diagnosis
Even before Barry was diagnosed with PNH, he discovered that it was important to be prepared for appointments and persistent in the search for answers.
See how Barry advocated for himself after his PNH diagnosis
Even before Barry was diagnosed with PNH, he discovered that it was important to be prepared for appointments and persistent in the search for answers.
Patient organizations
About
A non-profit organization formed in 2009 dedicated to making a difference in the lives of people living with PNH through advocacy, education and support to help them rise above the challenges of their disease.
About
A leading funder of research in bone marrow failure diseases in Canada that supports patients and caregivers living with aplastic anemia, myelodysplastic syndrome (MDS) and paroxysmal nocturnal hemoglobinuria (PNH).
Your Doctor Conversation Guide
Use the Doctor Conversation Guide to get the conversation started around a sub-optimal treatment response.
Your Doctor Conversation Guide
Use the Doctor Conversation Guide to get the conversation started around a sub-optimal treatment response.
Are you experiencing a sub-optimal treatment response?
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