Patient and Family Webinars

Do you or someone you love need blood or platelet transfusions? For many bone marrow failure disease patients, this is a regular part of treatment but there are some important things to know about transfusions and complications including iron overload. This session will discuss blood and blood products and will include imagery of transfusions including needles so it may not be suitable for all conference attendees.

Getting the right diagnosis can be difficult and many patients with bone marrow failure diseases are often misdiagnosed or diagnosis is delayed. This session, recording during the Summer 2021 Patient & Family Conference, will explain how aplastic anemia, MDS, PNH and AML are diagnosed including a discussion of the tests that are run, how you can read your own lab reports and how your treating hematologist/oncologist uses these results to diagnose you and make treatment recommendations.

Managing the side effects of a bone marrow failure disease and the treatments can be a real challenge. This recorded session from the Summer 2021 Patient & Family Conference will cover most of the major side effects with practical solutions for making your life much better. This session will reference prescription drug treatment options as well as lifestyle enhancements.

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. 

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. 

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.

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.

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.

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. 

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. 

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. 

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. 

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.

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.  

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.

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. 

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. 

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. 

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