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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

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

The is a pre-recorded session with the original PNH Registry Launch video and audience Q & A. 

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Bone Marrow Transplant, Aplastic Anemia, Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Managing Your Treatment, 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 who are dealing with graft vs host disease (GVHD) post-transplant for a bone marrow failure disease, those who are providing care to someone with GVHD and patients considering transplant who want to more about living with GVHD.  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 transplant support group emails.  

As always, our panelists cannot provide you with medical advice and we encourage you to ask your treating hematologist or oncologist about your specific health needs. 

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

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 PNH 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 PNH support group emails.  

As always, our panelists cannot provide you with medical advice and we encourage you to ask your treating hematologist or oncologist about your specific health needs. 

Topic(s): Myelodysplastic Syndromes (MDS)

Dr. Komrokji is the Vice chair of the Malignant Hematology Department and the head of the Leukemia and MDS Section at Moffitt Cancer Center. In this session, he discusses a wide variety of treatment options for MDS patients outside of transplant.

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Bone Marrow Transplant

Dr. Joachim Deeg is an expert in bone marrow failure and blood and bone marrow cancers. He is interested in how leukemia develops, especially via a precancerous blood disorder called myelodysplastic syndrome, or MDS. His research encompasses pathophysiology, genetics and gene regulation of this disorder and its progression to leukemia. He also leads clinical trials of new treatment approaches for MDS. He has established bone marrow transplantation from healthy donors as a curative therapy for MDS, aplastic anemia and a group of blood cancers called myeloproliferative neoplasms. Dr. Deeg has also worked extensively in animal models and developed a regimen, adopted worldwide, for the prevention of graft-vs.-host disease, or GVHD, a common and potentially dangerous complication of blood stem cell transplantation. His recent studies have included the use of alpha-1 anti-trypsin to treat GVHD. Dr. Deeg is also interested in the ethics of decision-making regarding the optimal treatment strategy for a given patient. This session covers transplant for MPNs.

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

Dr. Anna Halpern is a hematologist-oncologist and a clinical researcher. Her work focuses on hematologic (blood-based) malignancies — specifically, acute myeloid leukemia (AML), myelodysplastic syndrome (MDS), polycythemia vera, essential thrombocythemia and myelofibrosis. This session covers leukemic transformation which means when a bone marrow failure disease transitions to leukemia, usually AML.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Gerard Socié, MD, PhD, is the head of the hematology department at Hospital Saint-Louis, APHP. Gerard Socié has a research appointment at the Institut Pasteur -APHP with Dr. Lars Rogge.   His main fields of expertise are transplantation (GvHD), aplastic anemia, PNH and Fanconi Anemia.  

Dr. Socié discusses the diagnosis, treatment and prognosis of PNH in this pre-recorded session. 

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Bone Marrow Transplant, Aplastic Anemia, Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Managing Your Treatment, Acute Myeloid Leukemia (AML)

The faculty from the 8th Patient Conference join together to answer audience-submitted questions about treatment options, clinical trials and other topics related to bone marrow failure conditions. Led by Dr. Deeg, this session was pre-recorded during the virtual event on June 26, 2021. 

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Living Well with Bone Marrow Failure

Dr. Ruben Mesa is the director of UT Health San Antonio MD Anderson Cancer Center, one of only four National Cancer Institute-designated cancer centers in Texas. For almost 30 years the cancer center has had a deep focus on providing world-class cancer care, advancing cancer research and educating the next generation of cancer care scientists and care providers.  He is a global expert in Myeloproliferative Neoplasms (MPNs).  

This pre-recorded session covers the non-transplant options for patients living with MPNs. 

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Aplastic Anemia, Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)

Sioban Keel, M.D., is a board certified hematologist at SCCA and a UW associate professor of Hematology and Medicine.

Dr. Keel believes that excellent medical care requires a combination of up-to-date knowledge and compassionate, individualized patient care. She recognizes that excellent care requires physicians who communicate effectively with and educate each patient so that they understand their condition and can be a partner in determining the best treatment plan.

Dr. Keel earned her M.D. at the University of Minnesota. Her clinical and research interests include benign red blood cell disorders, iron metabolism, acquired aplastic anemia, congenital marrow failure syndromes, neurovisceral porphyrias, hemostasis and thrombosis disorders.

This session discusses how some bone marrow failure diseases can be inherited and what that means for patient care. 

Topic(s): Bone Marrow Transplant, Myelodysplastic Syndromes (MDS)

Dr. Bart Scott specializes in treating patients with myelodysplastic syndromes, or MDS, and myeloproliferative neoplasms, or MPN. These are a collection of diseases in which the bone marrow produces either too many or too few mature blood cells. Dr. Scott studies ways to improve treatment strategies for these patients, in particular new combinations of conditioning regimens prior to blood stem cell transplant.

This session focuses on transplant options for MDS patients. 

Topic(s): Pediatric Bone Marrow Failure Diseases, Aplastic Anemia

Dr. Kanwaldeep Mallhi is a pediatric oncologist and hematologist who specializes in nonmalignant blood disorders in children. These disorders include immunodeficiencies, bone marrow failure and metabolic errors. She is an expert in pediatric blood stem cell transplants, and her research focuses on alternative donor sources and the development of reduced-intensity conditioning regimens, which use radiation, chemotherapy or other procedures to remove diseased or failing cells prior to transplant.

Dr. Mallhi discusses severe aplastic anemia (SAA) and how it is treated based on the age and health condition(s) of the patient.

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Bone Marrow Transplant, Aplastic Anemia, Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Managing Your Treatment, Acute Myeloid Leukemia (AML)

Costa Herbert, RN, is the Blood and Marrow Transplant Program Nursing Supervisor at Seattle Cancer Care Alliance.

This pre-recorded session gives an overview of what a patient and their caregivers can expect during treatment for bone marrow failure disease including side effects, emotional impact and financial challenges.  

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Pediatric Bone Marrow Failure Diseases, Paroxysmal Nocturnal Hemoglobinuria (PNH), Bone Marrow Transplant, Aplastic Anemia, Myelodysplastic Syndromes (MDS), Managing Your Treatment, Acute Myeloid Leukemia (AML)

Dr. Bart Scott presents an overview of how bone marrow failure conditions are diagnosed including a discussion of the tools used by hematologists and oncologists to determine the best treatment options for their patients. 

This is a pre-recorded session which aired during the 8th Virtual Patient Conference hosted by AAMDSIF and the Fred Hutch and convened by Dr. Joachim Deeg.

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Myelodysplastic Syndromes (MDS)

Krisstina Gowin, DO is an Assistant Professor of Medicine at the University of Arizona. Dr. Gowin graduated from Chicago College of Osteopathic Medicine in 2009, where she received a merit scholarship and recognition from the American Women’s Medical Association for outstanding academic achievement. She completed internal medicine residency at University of Southern California, hematology and medical oncology training at Mayo Clinic in Arizona, fellowship training in integrative medicine at the University of Arizona. She is board certified in medical oncology, internal medicine and hematology.  

This session covers how patients and their loved ones can improve their quality of life while living with MDS and MPN. 

Topic(s): Aplastic Anemia

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 recorded webinar for people diagnosed with aplastic anemia or those who are providing care to someone with the disease.  

As always, our panelists cannot provide you with medical advice and we encourage you to ask your treating hematologist or oncologist about your specific health needs. 

Topic(s): Myelodysplastic Syndromes (MDS)

Dr. Carraway does a deep dive into the most promising MDS treatments and research presented at the December 2020 ASH meeting including drugs that are in the development pipeline and will soon be available for patients. 

You can download the companion publication Research Summary - ASH 2020 MDS AML here:  https://www.aamds.org/education/patient-guides-and-fact-sheets 

Topic(s): Bone Marrow Transplant, Myelodysplastic Syndromes (MDS)

Dr. Shaffer provides an overview of the haploidentical transplant process and discusses how this treatment option might be right for some MDS patients. 

Dr. Brian Shaffer is a board certified hematologist specializing in bone marrow transplantation for leukemia, myelodysplastic syndromes (MDS), lymphoma and other bone marrow disorders.  He works with a team at Memorial Sloane Kettering Cancer Center to provide comprehensive cancer care to patients.  

Dr. Shaffer is a researcher as well as a clinician who focuses on the role of Natural Killer (NK) cells in outcomes after transplant.  NK cells are white blood cells that have anti-tumor and anti-infection properties.  Dr. Shaffer is also focused on improving outcomes for transplant patients without a matched sibling donor through his work as a principal investigator for a number of ongoing clinical trials. 

Topic(s): Bone Marrow Transplant, Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)

Dr. Ivana Gojo, Associate Professor of Oncology at Johns Hopkins Medicine, discusses the current treatment options for patients with relapsed/refractory AML as well as some of the most promising treatment options that are in clinical trial

Topic(s): Myelodysplastic Syndromes (MDS)

Lucy Godley, MD, PhD, (UChicago Medicine) discusses the connection between heredity and MDS. While MDS is most often not inherited, there are some genetic mutations and other genetic conditions that can lead to a diagnosis of MDS.

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