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Patient and Family Webinars

Rare blood cancer and bone marrow failure diseases are often difficult to diagnose and even harder to explain. AAMDSIF brings international experts to your computer, tablet or smartphone using language that is easy to understand in a convenient one hour format. We have hundreds of webinars available for you to watch at any time you want!

Register for Upcoming Patient Webinars

Wed, 04/10/2024 - 10:00pm (EDT) 2023 ASH Update - MDS and AML 2023 ASH Update: M-D-S and A-M-L

Watch Past Webinar Recordings

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

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

Topic(s): Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)

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

Topic(s): Aplastic Anemia

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

Topic(s): Myelodysplastic Syndromes (MDS)

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

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Myelodysplastic 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.

Topic(s): Bone Marrow Transplant

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. 

Topic(s): Myelodysplastic Syndromes (MDS)

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.

 

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Paroxysmal Nocturnal Hemoglobinuria (PNH), Bone Marrow Transplant, Aplastic Anemia, Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Managing Your Treatment, Acute Myeloid Leukemia (AML)

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. 

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

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.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH), Aplastic Anemia

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.

Topic(s): Managing Your Treatment

 

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.

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Bone Marrow Transplant, Aplastic Anemia, Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)

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.  

Topic(s): Bone Marrow Transplant, Living Well with Bone Marrow Failure, Managing Your Treatment

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. 

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Myelodysplastic Syndromes (MDS)

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). 

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

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.

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Bone Marrow Transplant

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.

Topic(s): Acute Myeloid Leukemia (AML)

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.

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Bone Marrow Transplant, Myelodysplastic Syndromes (MDS), Managing Your Treatment, Acute Myeloid Leukemia (AML)

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.

Topic(s): Aplastic Anemia

Daria Babushok, MD, PhD (PennMedicine) is a leading researcher and clinician in hematological malignancies and will provide a thorough overview of aplastic anemia, from diagnosis to treatment. This session is appropriate for patients, family members, caregivers and friends.

Topic(s): Myelodysplastic Syndromes (MDS)

Suresh Balasubramanian, MD, with Karmanos Cancer Center, will provide a comprehensive overview of low risk myelodsyplastic syndromes (MDS).  This session is suitable for patients, family members, caregivers and friends who are newly diagnosed and those who have been living with MDS for years.