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.
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!
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Watch Past Webinar Recordings
PNH Non-Transplant Therapies and Management -2023 Omaha Patient -Family Hybrid Conference (Apr 2023)
Topic(s): Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)
In this webinar, Dr. Lourdes Mendez discusses research most relevant to patients reported over the past year on the biology and treatment on MDS and secondary AML. These studies were presented at the American Society of Hematology (ASH) 2022 meeting. Research findings are explained along with the potential impact of this research on understanding and treating MDS and AML. This is an advanced scientific presentation. The question and answer session is included in this recording.
Topic(s): Aplastic Anemia
- Presenter: Bhavisha Patel, MD
Dr. Patel explains the challenges and successes for treating aplastic anemia when diagnosed in an older adult. The recording includes an extensive question and answer section with the virtual attendees.
Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)
- Presenter: 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.
Topic(s): Aplastic Anemia
Listen to these patients with aplastic anemia describe their challenges and joys in this recent webinar recording.
Topic(s): Living Well with Bone Marrow Failure
- Presenter: Areej El-Jawahri, MD
Areej El-Jawahri, MD, and Elyse R. Park, PhD teach patients coping strategies and practical tips for easing the stress of living with a bone marrow failure disease. Patients with aplastic anemia, PNH, or MDS benefit from viewing this recorded program.
Topic(s): Myelodysplastic Syndromes (MDS)
- Presenter: Naval Daver, MD
Dr. Naval Daver describes recent research and upcoming treatments for MDS presented at the ASCO and EHA 2022 meetings. Discover how the understanding of MDS, or Myelodysplastic Syndromes, has advanced as well as possible new treatments in this recording.
Topic(s): Pediatric Bone Marrow Failure Diseases
This webinar features parents and guardians of pediatric patients who have been diagnosed with a bone marrow failure disease like aplastic anemia, MDS or PNH. The panel includes parents and guardians at all stages of their journeys, from diagnosis to treatment to survivorship.
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, 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.
Topic(s): Managing Your Treatment
In this webinar, Joanna Myers Casale, RD, CSO, discusses how the foods patients choose can help them cope with side effects, such as loss of appetite, nausea, vomiting, diarrhea, chewing and swallowing difficulties, and taste changes. The recording includes questions from attendees.
Topic(s): Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)
- Presenter: Namrata Chandhok, MD
Learn about living with High-Risk MDS, Myelodysplastic Syndromes in this session. Learn about treatments and therapies for MDS and AML in this session with Dr. Namrata S. Chandok.
Topic(s): Myelodysplastic Syndromes (MDS)
- Presenter: Mikkael Sekeres, MD, MS
Mikkael Sekeres, MD, MS, explains Low-Risk MDS, or Myelodysplastic Syndromes, in this session. This presentation reveals answers to most questions that patients and families have.
Topic(s): Bone Marrow Transplant
- Presenter: Antonio Jimenez Jimenez, MD
Bone marrow transplantation is rigorous, so understanding the challenges from the process is essential. Learn from Dr. Antonio Jimenez Jimenez all about what patients can expect when this treatment is selected.
Topic(s): Living Well with Bone Marrow Failure
- Presenter: Amber Thomassen, APRN-BC, AOCNP
The patient's life changes with diagnosis of any bone marrow failure disease. Learn how to adapt and thrive from Amber Thomassen, APRN-BC, AOCNP, in this session recording.
Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)
- Presenter: Damian Laber, MD
Dr. Damian Laber anticipates all your questions about PNH, or Paroxysmal Nocturnal Hemoglobinuria, in this session recording.
Topic(s): Aplastic Anemia
- Presenter: Mark Goodman, MD
What does it mean to be diagnosed with aplastic anemia? Which treatments can be used? How do you manage the disease?
Learn from Dr. Mark Goodman in the recording of this session.
Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH), Aplastic Anemia
- Presenter: 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 (EHA) 2022 and American Society of Clinical Oncology (ASCO)2022. Research findings are explained along with the potential impact of this research on understanding and treating aplastic anemia and PNH. This is an advanced scientific presentation.
Topic(s): Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)
- Presenter: Sandrine Niyongere, MD
Dr. Sandrine Niyongere will gives a brief MDS overview and then answer questions from participants. This interactive webinar recorded patients asking questions that are answered directly by a MDS Expert. #MDS #myelodysplasia #bloodcancer
Topic(s): Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)
Patient panel discussions are a chance to meet some of the inspiring patients, caregivers and parents who are dealing with a bone marrow failure disease. Panel discussions are a bit different from our regular educational webinars so please plan to participate via the Q & A window. This is a great webinar for people diagnosed with MDS or those who are providing care to someone with the disease. We extend a special invitation to newly diagnosed patients to join us to learn more about living with the disease and to sign up for our MDS support group emails.
Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Pediatric Bone Marrow Failure Diseases, Paroxysmal Nocturnal Hemoglobinuria (PNH), Bone Marrow Transplant, Aplastic Anemia, Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Managing Your Treatment, Acute Myeloid Leukemia (AML)
- Presenter: 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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