Patient and Family Webinars

Rare blood cancer and bone marrow failure diseases are often difficult to diagnose and even harder to explain. AAMDSIF brings international experts to your computer, tablet or smartphone using language that is easy to understand in a convenient one hour format. We have hundreds of webinars available for you to watch at any time you want!

Register for Upcoming Patient Webinars

PNH Patient Panel 2026 Webinar: P-N-H Patient Panel
The MDS Spectrum - Lower Risk MDS, Higher Risk MDS and MDS/MPN Overlap 2026 Webinar: The MDS Spectrum - Lower Risk M-D-S, Higher Risk M-D-S and M-D-S/M-P-N Overlap

Watch Past Webinar Recordings

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Caroline Piatek, MD
Dr. Caroline Piatek defined PNH, how PNH is diagnosed, the available treatment options, and side effect management. She also answered questions about PNH (Paroxysmal Nocturnal Hemoglobinuria.)

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Charles J. Parker, MD
Charles Parker, MD, AB from Huntsman Cancer Institute explains various treatments for patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria, in this session. Dr. Parker explains why particular therapies are preferred as options for therapies continue to advance.

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Topic(s)
Aplastic Anemia
Bone Marrow Transplant
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Pediatric Bone Marrow Failure Diseases
Related Bone Marrow Failure Diseases and Malignancies
Presenter(s)
Suneet Agarwal, MD, PhD
Michael Pulsipher, MD
Suneet Agarwal, MD, PhD, from Boston Children's Hospital answered parents' questions in this session from the Patient and Family Conference in Salt Lake City, Utah. Find the answers to your most pressing question in this recording.

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Topic(s)
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Bone Marrow Transplant
Living Well with Bone Marrow Failure
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Pediatric Bone Marrow Failure Diseases
Related Bone Marrow Failure Diseases and Malignancies
Watch this informative patient panel from the 2023 Patient and Family Conference in Salt Lake City, Utah. This session was led by Jill Gahlsford, RN, of Huntsman Cancer Institute.

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Topic(s)
Aplastic Anemia
Paroxysmal Nocturnal Hemoglobinuria (PNH)
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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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Living Well with Bone Marrow Failure

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Learn how to manage your PNH, or paroxysmal nocturnal hemoglobinuria, symptoms and complications with the instruction from this session of the 2023 Omaha Patient and Family Hybrid Conference.

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Topic(s)
Aplastic Anemia
Living Well with Bone Marrow Failure
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Related Bone Marrow Failure Diseases and Malignancies
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.

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Topic(s)
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Living Well with Bone Marrow Failure
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Related Bone Marrow Failure Diseases and Malignancies
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.

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Alex Nester, MD
From the 2023 Omaha Patient and Family Hybrid Conference: PNH Non-Transplant Therapies with Dr. Alex Nester. Learn symptom management and options for therapies in this session which includes questions from the audience.

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Thomas G. DeLoughery, MD, MACP, FAWM
Thomas G. DeLoughery, MD, MACP, FAWM, answers questions from the live, online audience in this recording on PNH, or Paroxysmal Nocturnal Hemoglobinuria.

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Topic(s)
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Bone Marrow Transplant
COVID-19
Living Well with Bone Marrow Failure
Managing Your Treatment
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Pediatric Bone Marrow Failure Diseases
Related Bone Marrow Failure Diseases and Malignancies
In this webinar, Jane Hamilton discusses the benefits of respite care for caregivers. Learn tips and tools to hire a respite worker, how to partner and share the care.

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Damian Laber, MD
Dr. Damian Laber anticipates all your questions about PNH, or Paroxysmal Nocturnal Hemoglobinuria, in this session recording.

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Topic(s)
Aplastic Anemia
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Phil Scheinberg, MD
In this webinar, Dr. Phillip Scheinberg 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) 2021, European Hematology Association…

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Topic(s)
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Bone Marrow Transplant
Living Well with Bone Marrow Failure
Managing Your Treatment
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Pediatric Bone Marrow Failure Diseases
Related Bone Marrow Failure Diseases and Malignancies
Presenter(s)
Mikhail Kogan, MD
Dr. Mikhail Kogan, Medical Director of the GW Center for Integrative Medicine, discusses the differences between integrative, holistic and functional medicines and how they can be used to treat patients. The end of the webinar features questions from patients in the audience.

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)

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Topic(s)
Aplastic Anemia
Living Well with Bone Marrow Failure
Managing Your Treatment
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Related Bone Marrow Failure Diseases and Malignancies
Megan Pailler, PhD, Assistant Professor of Oncology, provides clinical assessment and intervention services to oncology patients on both an inpatient and outpatient basis. Her area of focus has been the hematological services, including leukemia, lymphoma, and bone marrow…

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Ilene Weitz, MD
Satheesh Chonat, MD
These three experts discuss new and upcoming treatments for PNH, or Paroxysmal Nocturnal Hemoglobinuria.

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Topic(s)
Managing Your Treatment
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Bart Scott, MD
This session features Dr. Bart Scott. He describes how PNH patients can live their best lives with treatments and disease management. Dr. Scott presented this session at the 2022 Buffalo Patient and Family Conference.

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Topic(s)
Aplastic Anemia
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Daria Babushok, MD, PhD
Dr. Daria Babushok discusses the significance of PNH clones in the diagnostic assessment of patients with bone marrow failure and recognized indications for starting complement inhibitor therapy in PNH (Paroxysmal Nocturnal Hemoglobinuria). The question and answer session is…
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