Patient and Family Webinars

This session is designed for newly diagnosed aplastic anemia patients, family members and caregivers and is a great refresher course for longer-term patients. You will learn about the standard tests used to diagnose aplastic anemia and see what your cells look like under the microscope. The session will also cover the treatment options available as well as those that are currently being studied in clinical trial and may be available in the near future. This session was recorded at the Summer 2021 Patient & Family Conference. 

When someone is diagnosed with a bone marrow failure disease, one of the first questions asked is "How long do I have to live?" This recorded session from the Summer 2021 Patient & Family Conference will help you understand how your treating hematologist/oncologist comes up with a number of years or months and what factors can change that expectation - from treatment to lifestyle improvements.

Dr. Jorg Dietrich will help patients and their loved ones understand the chemistry and biology behind what happens to patient brains when chemotherapy and other treatments are introduced. This is a great session for caregivers, family members and patients.

This is a fun and interactive session for patients, family members and caregivers who are affected by bone marrow failure disease recorded during the Summer 2021 Patient & Family Conference.  You will learn about safe and appropriate exercise options and diets specific to your disease(s) and what not to do.

As always, please consult your treating hematologist/oncologist for approval of any change in your diet and exercise plan. The recommendations in this session will be general and not right for everyone.

This session will help you understand all of the factors that go into an MDS risk score and what that means for prognosis and treatment recommendations. You will also learn about the other tools that hematologists/oncologists use to determine risk once treatment has started and how they answer the question: "how long do I have to live?"

When a child is diagnosed with a bone marrow failure disease, often the focus is soley on the child's medical care. This session will help parents, guardians and others who parent children with aplastic anemia, PNH, MDS, AML and other bone marrow failure conditions navigate the complexities of parenting the child undergoing treatment and any other children in the home. Please bring your questions and suggestions to this interactive session with a trained pediatric social worker.

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.

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.

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.

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.