Webinars

Being a caregiver can be physically and emotionally stressful. Caregivers do not often realize their own emotional and physical health is compromised. This session will help caregivers understand the impact of caregiving and offer tips on how to maintain their own health.

This session will provide a comprehensive overiew of PNH, from diagnosis to treatment.

This session will provide a comprehensive overview of high risk MDS and the transition to MDS, from diagnosis to treatment.

This session will provide a thorough overview of aplastic anemia, from diagnosis to treatment

This session provide a comprehensive overview of low risk myelodsyplastic syndromes (MDS).

In this webinar, Dr. Andrew Brunner will present the most promising research presented at the 2021 European Hematology Association (EHA) and American Society of Clinical Oncology (ASCO) meetings for MDS. After the presentation, there will be a Q & A session for participants. 

Dr. Catherine Lee will provide a comprehensive overview of chronic and acute graft vs host disease ("GvHD") which is a complication of bone marrow transplant.  While some patients have very mild GvHD, many patients have more severe and long term disease.  Dr. Lee will discuss pre-transplant prevention and post-transplant management of GvHD. 

This session will also include a live Q & A session.  You are invited to submit your questions in advance to help@aamds.org. 

Dr. Jason Mendler will give a brief MDS overview and then answer questions from participants. This interactive webinar offers you the opportunity to ask questions that are answered directly by a MDS Expert. You are invited to send your questions in advance to help@aamds.org.

Dr. Sarah Vij will deliver a presentation on how male fertility can be affected by bone marrow failure diseases and related treatments and what steps can be taken to preserve fertility.  This webinar will include discussions suitable for adult patients, family members, and caregivers and may not be appropriate for a young audience. 

This session will also include a live Q & A session.  You are invited to submit your questions in advance to help@aamds.org. 

Dr. Elizabeth Griffiths will give a brief PNH overview and then answer questions from participants. This interactive webinar offers you the opportunity to ask questions that are answered directly by a PNH Expert. You are invited to send your questions in advance to help@aamds.org. 

This webinar focuses on the latest in research presented at the 2021 European Hematology Association(EHA) and American Society of Clinical Oncology (ASCO) annual meetings. Dr. Austin Kulasekararaj has selected a number of abstracts (research summaries) and provides a high-level assessment of new and ongoing research into treating  "> ">aplastic anemia and/or PNH. There will be a Q & A session at the end of the presentation. 

This webinar is suitable for patients, families and caregivers who want to learn more about the implications of chemotherapy-induced peripheral neuropathy. Approximately 30% - 40% of patients who undergo chemotherapy for a bone marrow failure condition experience peripheral neuropathy and the effects can linger after completing treatment. Dr. Hammond will discuss the best treatment and management options for patients.

Constandina Herbert, MN, RN, BMTCN of the Fred Hutchinson Cancer Research Center will review all of the things that patients, families, and caregivers should know before undergoing a transplant. This interactive session will cover topics ranging from preparing the home for post-transplant recovery to recommendations for rehabilitative therapies and potential complications.  

This session will also include a live Q & A session.  You are invited to submit your questions in advance to help@aamds.org. 

This webinar is suitable for patients, families and caregivers who are considering transplant as a curative option for their bone marrow failure disease or those who have already undergone transplant. 

Dr. Yang will discuss the cardiac complications that can occur post-transplant and what pre-transplant diagnostic tests should be conducted and what the transplant team can do post-transplant to manage cardiac health. 

This session will also include a live Q & A session.  You are invited to submit your questions in advance to help@aamds.org. 

MDS/MPN overlap syndromes have long been difficult to define and diagnose since they were discovered.  They have similar features, symptoms and test results to other myeloid neoplasms like MDS and MPN which makes it hard to diagnose.  By using next generation sequencing, hematologists/oncologists are able to better understand these syndromes and plan a course of treatment that is more effective and has better outcomes. 

Dr. Hunter will review changes in understanding clinicians and researchers have about diagnosing and treating these overlapping syndromes (including chronic myelomonocytic leukemia, juvenile myelomonocytic leukemia, atypical chronic myeloid leukemia, MDS/MPN with ring sideroblasts and thrombocytosis and MDS/MPN unclassifiable).  This session will also include a live Q & A session.  You are invited to submit your questions in advance to help@aamds.org. 

This interactive session is a must-attend for all newly diagnosed PNH patients, family members, and caregivers. You will understand how your hematologist/oncologist diagnosed PNH, what treatment options are available based on your disease presentation, longer-term prognosis and what is in the clinical trials pipeline.

Dr. Celalettin Ustun is the Section Chief, Bone Marrow and Stem Cell Transplant at Rush University in Chicago. His presentation will focus on how and when transplant is an option for bone marrow failure patients, including the risks and benefits of various approaches to transplantation. Dr. Ustun will also share some of the latest advances in relapse prevention and in mitigating Graft vs Host Disease (GvHD) as well as new thinking in pre-transplant conditioning regimes.

Palliative medicine is specialized medical care for people living with a serious illness. Palliative or supportive care is focused on relieving the symptoms and improving the patient's quality of life. Many bone marrow failure disease patients receive palliative or supportive care throughout their treatment journey and Dr. Downer will discuss some of the best practices for our patients, family members, and caregivers. During this session, you'll learn about palliative or supportive care services that help other bone marrow failure disease patients and how this care can make you feel better and improve your quality of life.

This session is suitable for patients, family members, and caregivers who are living with a diagnosis of higher risk MDS and who may (or already have) transition to AML. Dr. Jay Lang will discuss how your hematologist/oncologist arrives at the diagnosis and how they determine the best course of treatment including an assessment of the factors that go into making that determination (i.e. age, overall health, IPSS-R score, mutations, availability of treatment options, patient preferences). He will also talk about transplant vs. non-transplant options and the prognosis for patients before, during and after treatment.