living with disease

Evaluation of the Quality of Life and Treatment Experiences of Patients with Paroxysmal Nocturnal Hemoglobinuria

The purpose of the study is to learn what it is like to have PNH and being treated with for PNH. Individuals who participate in the study will complete an online survey about what it is like to live with PNH. The survey will take about 45 minutes. Participants may also be asked to take part in a one-hour interview by telephone or computer. The interviewer will ask questions about what it is like to have, and be treated for, PNH. No medical treatment of any kind will be given as part of this study.

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Addressing Barriers and Challenges to Patient Care - 2023 Omaha Patient and Family Hybrid Conference

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Topic(s)
Related Bone Marrow Failure Diseases and Malignancies
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Aplastic Anemia
Living Well with Bone Marrow Failure
Myelodysplastic Syndromes (MDS)
Acute Myeloid Leukemia (AML)
The patient panel discusses this essential topic: Barriers and Challenges to accessing care. Learn their techniques for overcoming these barriers in this session from the Patient and Family Conference.

Survivorship: Life after Diagnosis - 2023 Omaha Patient and Family Hybrid Conference

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Topic(s)
Related Bone Marrow Failure Diseases and Malignancies
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Aplastic Anemia
Living Well with Bone Marrow Failure
Myelodysplastic Syndromes (MDS)
Watch this session to learn techniques for coping after the diagnosis of a bone marrow failure disease such as aplastic anemia, MDS, or PNH. The session is useful for all bone marrow failure disease patients.

ASH 2022 Update: Aplastic Anemia and PNH

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Aplastic Anemia
Presenter(s)
Emma Groarke, MD, FRCPath
Dr. Emma Groarke discusses research most relevant to patients reported over the past year on the biology and treatment on Aplastic Anemia and PNH. These studies were presented at the American Society of Hematology (ASH) 2022 meeting and their findings will be explained along with…
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