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 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?"

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.

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.

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. 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.

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.

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. 

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.