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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

Fri, 11/05/2021 - 1:00pm (EDT) Understanding GVHD

Watch Past Webinar Recordings

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. You are invited to send your questions in advance to help@aamds.org.

 

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. 

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

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. You are invited to send your questions in advance to help@aamds.org

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. There will be a Q & A session at the end of the presentation. 

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.  

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

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. 

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

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

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Eloy Roman, MD, PA with Lakes Research will discuss the recent advances in treating PNH including drugs recently approved as well as what's in the pipeline.  This session is ideal for PNH patients, family members, and caregivers.

Topic(s): Pediatric Bone Marrow Failure Diseases

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 webinar features parents and guardians of pediatric patients who have been diagnosed with a bone marrow failure disease like aplastic anemia, MDS or PNH.  The panel includes parents and guardians at all stages of their journeys, from diagnosis to treatment to survivorship. 

This is a great webinar for parents, guardians, family members and caregivers of pediatric patients. If a child in your life was recently diagnosed, we extend a special invitation to join us to learn more about living with the disease and to sign up for our pediatric parent 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. 

Topic(s): Pediatric Bone Marrow Failure Diseases, COVID-19

Dr. Rabi Hanna, Dr. Kate Eshleman and Taylor Buss from the Cleveland Clinic will participate in a panel discussion about the concerns and considerations for returning to school in the COVID-19 pandemic era.  Dr. Hanna will give an overview of the recommended precautions for families with school-age children and what factors to consider for returning to in-person schooling.  Dr. Eshleman and Ms. Buss will discuss the psychological factors that families should address when making their decisions about returning to school.  

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

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Pediatric Bone Marrow Failure Diseases, Paroxysmal Nocturnal Hemoglobinuria (PNH), Bone Marrow Transplant, Aplastic Anemia, Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS)

This recorded webinar is suitable for patients, families and caregivers who want to learn more about participating in clinical trials. Our patient panel includes current and former clinical trial participants who will share their experiences.  New treatment options are being developed every year thanks to dedicated researchers and study participants who are working to find curative treatments for bone marrow failure diseases. 

 

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

Watch the recording on-demand:

CURE® invites you to connect with our community of leukemia experts and advocacy group speakers, led by summit chair, Naval G. Daver, MD of The University of Texas MD Anderson Cancer Center, who will empower your cancer journey. Watch the Educated Patient® Leukemia Summit now.

Topic(s): Myelodysplastic Syndromes (MDS)

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 pre-recorded webinar for people diagnosed with MDS or those who are providing care to someone with the disease.  

Topic(s): Living Well with Bone Marrow Failure

Please note that this session may not be suitable for younger attendees however the content discussed will be relevant to all patients and their loved ones. Relationships are complex and complicated when partners are in the best of health. When someone you love is diagnosed with a bone marrow failure disease, those relationships can be tested and tried in ways that can bend or break even the strongest partnerships. This pre-recorded session will discuss how patients and their loved ones can navigate their journeys, how therapy can be helpful and what tools and tips our expert has for living your best life with your loved one.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

The is a pre-recorded session with the original PNH Registry Launch video and audience Q & A. 

Topic(s): Aplastic Anemia

Aplastic anemia has been treated successfully since the 1970s with immunosuppressive therapy (ATG) and more recently with hematopietic cell transplantation. Unfortunately, some patients have a relapse where the disease characteristics and symptoms return after there’s been a period of remission.  Others do not respond to one type of treatment and they have to try another method.  This session will cover best practices in treating aplastic anemia that has relapsed or is refractory.  This session is suitable for all patients, family members and caregivers.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

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. 

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

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.

Topic(s): Pediatric Bone Marrow Failure Diseases

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?

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