Patient and Family Webinars

Paroxysmal Nocturnal Hemoglobinuria (PNH) is extraordinarily rare and qualified hematologists/oncologists with expertise in PNH are equally hard to find.  Fortunately, AAMDSIF has secured Dr. Carlos De Castro (Duke University School of Medicine) to provide an update on how to best manage PNH from the patient's perspective along with insight into new treatment options that are in the pipeline that may provide some hope for PNH patients experiencing complications with their disease. 

This is an introductory session for newly diagnosed PNH patients, for patients who are hoping to get a refresher on their disease and for the family members and caregivers of PNH patients. Topics covered will include how hematologists/oncologists accurately diagnose PNH, what the current and near-future treatment options are for PNH patients, an update on the Global PNH Patient Registry and what clinical trials are currently underway for PNH patients.

This session has been designed for the parents, guardians and adult family members of pediatric bone marrow failure disease patients. Drs. Olson and Shimamura will spend the entire session answering your specific questions which you can submit live or in advance to help@aamds.org. Some of the topics we expect to discuss include: * Explaining the diagnosis to siblings and other younger family members * How support groups work for patients under 18 * What should families consider in terms of fertility preservation and future family planning? * What are some of the longer-term consequences of going to transplant? * Getting a second opinion while getting care closer to home - how does it work, who can help? * Are there any other diseases/conditions that may occur later in life? * How do we best handle the transition from pediatric hematologist/oncologist to adult provider? * Getting the COVID-19 vaccine ... what do you think?

Patients who have been diagnosed with higher risk MDS or even AML secondary to an MDS diagnosis are often overwhelmed by online information about prognosis and treatment options while managing side effects. This session will help you understand what you need to know about your diagnosis, how to work with your treating hematologist/oncologist to make decisions that reflect your wishes and what new options are most promising for patients.

This session is designed for newly diagnosed MDS patients who want to understand what their options are for treatment, including how their specific mutations may influence the treatment path recommended by their treating hematologist/oncologist. This session is also a great refresher course for patients who have been diagnosed for some time, those who may have discovered that they have an overlapping condition such as an aplastic anemia patient who now also has MDS or for family members and caregivers who are trying to better understand their loved one's diagnosis.

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. 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.