Dr. Vinod Pullarkat explains how the treatments and therapies for PNH, or Paroxysmal Nocturnal Hemoglobinuria, have changed and which new therapies may be available soon.
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
| Mon, 04/21/2025 - 2:00pm (EDT) | Secondary AML - Webinar 2025 |
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| Sat, 04/26/2025 - 10:00am (EDT) | Low Risk MDS |
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| Sat, 04/26/2025 - 12:30pm (EDT) | MDS/MPN Overlap |
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Watch Past Webinar Recordings
Topic(s): Living Well with Bone Marrow Failure, Managing Your Treatment
- Presenter: Finly Zachariah, MD
Finly Zachariah explains how and why treating pain issues during treatment can be beneficial to patients in this session from the 2024 Los Angeles Patient and Family Conference Session.
Topic(s): Bone Marrow Transplant, Aplastic Anemia, Myelodysplastic Syndromes (MDS)
- Presenter: Ryotaro Nakamura, MD
Dr. Ryotaro Nakamura explains the entire process for bone marrow transplantation in this recorded session from the 2024 Los Angeles Patient and Family Conference. Learn the potential ways transplants can help patients with aplastic anemia or MDS.
Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH), Aplastic Anemia, Myelodysplastic Syndromes (MDS)
- Presenter: Paibel Aguayo-Hiraldo, MD
Dr. Paibel Aguayo-Hiraldo, MD, anticipates your questions about inherited bone marrow failure syndromes in this recording from the 2024 Los Angeles Patient and Family Conference.
Topic(s): Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)
In this webinar, Dr. Akriti Jain will explains the latest research presented the American Society of Hematology meeting on MDS and secondary AML. This is an advanced presentation.
Topic(s): Myelodysplastic Syndromes (MDS)
In this webinar, patients diagnosed with MDS discuss their patient journey and share their personal experiences.
Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)
In this webinar, patients diagnosed with PNH discuss their patient journey and share their personal experiences.
Topic(s): Aplastic Anemia
In this webinar, patients diagnosed with Aplastic Anemia discuss their patient journey and share their personal experiences.
Topic(s): Pediatric Bone Marrow Failure Diseases
- Presenter: Susan Kirk, MSPAS, PA-C
In this webinar, Susan Kirk discusses the latest advances in treating pediatric aplastic anemia.
Topic(s): Bone Marrow Transplant
- Presenter: Annie Im, MD
In this webinar, Dr. Annie Im presents the latest research and treatment of GVHD.
Topic(s): Myelodysplastic Syndromes (MDS)
In this webinar, Jennie Vagher, certified genetic counselor, discusses hereditary or genetic predisposition to MDS. Jennie is an expert in rare cancer predisposition syndromes.
Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)
- Presenter: Taha Bat, MD
Dr. Taha Bat explains extravascular hemolysis, focusing on PNH (Paroxysmal Nocturnal Hemoglobinuria). This session is important for anyone affected by PNH.
Topic(s): Living Well with Bone Marrow Failure
- Presenter: Nathan R. Handley, MD
In this webinar, Dr. Nathan Handley discusses what is integrative medicine and how it can be part of your treatment plan. He answers audience questions in the recording.
Topic(s): Myelodysplastic Syndromes (MDS)
- Presenter: Kelly Bolton, MD, PhD
- Presenter: Eytan Stein, MD
In this webinar, Drs. Kelly Bolton and Eytan Stein discuss CCUS (clonal cytopenia of undetermined significance) and the connection to MDS.
Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Pediatric Bone Marrow Failure Diseases, Paroxysmal Nocturnal Hemoglobinuria (PNH), Bone Marrow Transplant, Aplastic Anemia, COVID-19, Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Managing Your Treatment, Acute Myeloid Leukemia (AML)
In this webinar, Jennifer Lotter explains medical terms most commonly used with a diagnosis of aplastic anemia, MDS, and PNH.
Topic(s): Pediatric Bone Marrow Failure Diseases, Paroxysmal Nocturnal Hemoglobinuria (PNH), Aplastic Anemia, Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)
- Presenter: Jane Meier Hamilton, RN, MSN
In this webinar, Jane Hamilton discusses how and why it is important for caregivers to practice self care. The entire interactive session was recorded.
Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Pediatric Bone Marrow Failure Diseases, Paroxysmal Nocturnal Hemoglobinuria (PNH), Bone Marrow Transplant, Aplastic Anemia, COVID-19, Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Managing Your Treatment, Acute Myeloid Leukemia (AML)
- Presenter: Swapna Thota, MD
In this webinar, Dr. Thota will discuss what caregivers can expect when their loved one is diagnosed- symptoms and side effects of disease and treatments.
Topic(s): Living Well with Bone Marrow Failure, Managing Your Treatment
Program participants will learn the basics of Medicare including how and when to enroll, the different parts of Medicare, the difference between Advantage and Supplement plans and what original Medicare does not cover, eligibility, how to avoid penalties, when to qualify for disability after a blood cancer diagnosis and which part covers infusion versus which part covers pill medications. Bonnie will also discuss what is new in 2024 for Medicare. This program is a must for anyone turning 65, over 65 and getting ready to retire, already on Medicare, or a caregiver for a loved one on Medicare.
Topic(s): Myelodysplastic Syndromes (MDS)
- Presenter: Lourdes Mendez, MD, PhD
Dr. Lourdes Mendez explains High-Risk MDS, or Myelodysplastic Syndromes, in detail for patients and families from the 2023 Patient and Family Conference in New Haven, CT. Learn about this condition and treatment options by watching now.
Topic(s): Aplastic Anemia
Dr. Nikolai Podoltsev presents this session for Aplastic Anemia non-transplant therapies.
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