Patient and Family Webinars | Page 11 | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

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

Fri, 05/24/2024 - 2:00pm (EDT) ASH 2023 Update - Aplastic Anemia and PNH ASH 2024 Update on Aplastic Anemia and P-N-H

Watch Past Webinar Recordings

Topic(s): Bone Marrow Transplant

Dr. Cheng provides an overview of Bronchiolitis Obliterans Syndrome which can occur after hematopoietic stem cell transplantation (HSCT) and is a rare type of obstructive lung disease of the small airways. Diagnosing this condition and then managing it can be a challenge for patients and families. 

Topic(s): 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)

Chemo brain is how many patients and their loved ones describe the cognitive and memory problems that can occur during and after treatment for bone marrow failure disease. Sometimes called chemo fog, cognitive impairment or cognitive dysfunction, this side effect can be difficult for patients to navigate. This webinar discusses how chemo brain is diagnosed and treated.

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

Dr. Aditi Shastri, M.B.B.S. is a Hematologist/Oncologist at Montefiore Medical Center and is an Assistant Professor at the Albert Einstein College of Medicine. Dr. Shastri earned her medical degree from Lokmanya Tilak Municipal Medical College and is an experienced clinical researcher in the areas of acute myeloid leukemia, myelodysplastic syndromes, cancer stem cells, transcription factors, STAT3, RNA biology and therapeutic interference and health disparities. Her colleague, Rose Snyder, M.D. will be joining the presentation. Dr. Snyder is with the Jacobi Cancer Center at the Albert Einstein College of Medicine. Sweet Syndrome is associated with MDS in about 20% of cases. This webinar discusses the connection between Sweet Syndrome and MDS, treatment and prognosis.

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

Dr. Mims provides an overview of the latest treatment options in pipeline for High-Risk MDS and AML patients including several promising clinical trials that may be suitable for patients. 

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

A stem cell transplant for pediatric patients is the only curative option for many bone marrow failure diseases. Dr. David Jacobsohn of Children's Hospital gives a thorough presentation for patients and their families to understand the long term effects of this lifesaving treatment including secondary cancers and fertility issues. This is a "must watch" session for anyone who has undergone a transplant as a pediatric patient or for those who are considering this treatment option.  

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

Dr. Stefanie Thomas and Taylor Buss, Pediatric Oncology Social Worker (Cleveland Clinic), lead a panel discussion with two young adult patients with bone marrow failure disease, discussing their treatment journeys, the challenges and successes they've faced.  

Topic(s): Pediatric Bone Marrow Failure Diseases, Paroxysmal Nocturnal Hemoglobinuria (PNH), Aplastic Anemia, Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)

Seth Corey, MD, MPH (Cleveland Clinic), led an informative session for patients of all ages about the causes of bone marrow failure diseases like aplastic anemia, PNH, MDS and AML. Dr. Corey explains the difference between acquired and genetic disease, how that difference can affect treatment options and prognosis.

Topic(s): Aplastic Anemia

Rabi Hanna, MD (Cleveland Clinic) helps aplastic anemia patients and families understand the treatment options including new thinking on transplants from alternative donors for patients with acquired aplastic anemia. Dr. Hanna will also gives an update on the most promising developments currently in clinical trial

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

Dr. Seth Rotz and Taylor Buss (Cleveland Clinic) lead a panel discussion with two patients, Paige and Justin who were diagnosed with bone marrow failure disease while they were teenagers or young adults, underwent treatment and are now survivors. Dr. Rotz gives an overview of what characteristics he sees in his most successful patients and then Taylor Buss asks questions of our survivors - from dating to life as a young professional.

Topic(s): Myelodysplastic Syndromes (MDS)

Hetty Carraway, MD (Cleveland Clinic) leads an informative session for MDS patients who want to know more about how genetic mutations can affect treatment options and how doctors evaluate the risk of MDS progression based on international criteria.

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

Staci Arnold, MD, MBA, MPH (Emory University) shares her extensive research on what quality of life outcomes are most important to bone marrow failure disease patients and families and how to make your life better during diagnosis, treatment and survivorship.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Jaroslaw Maciejewski, MD, PhD and Bumikha Patel, MD (Cleveland Clinic), give an important update for PNH patients and families on new treatment options as well as promising drugs currently in clinical trial

Topic(s): Myelodysplastic Syndromes (MDS)

Amit K. Verma, MBBS, is a Professor in the Departments of Medicine (Oncology) and Development & Molecular Biology at Albert Einstein School of Medicine. Dr. Verma is the Director of the Division of Hemato-Oncology, Montefiore Department of Oncology. His primary area of research is in MDS.

Amer Zeidan, MBBS, MHS is an Associate Professor of Medicine (Hematology) at the Yale School of Medicine. Dr. Zeidan specializes in the management of MDS and acute myeloid leukemia (AML) and is an international expert in the clinical management and research of myeloid malignancies.

Dr. Verma and Dr. Zeidan give an update on the two newest treatments for MDS patients, INQOVI and REBLOYZL. They also give a brief update on what is in the immediate pipeline for MDS patients and what can be expected into 2021.

 

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Elizabeth Griffiths, MD is an Associate Professor at the State University of New York (SUNY) at Buffalo and a faculty member of the Roswell Park Comprehensive Cancer Center-SUNY Buffalo graduate training programs in the departments of Pharmacology and Therapeutics, Translational Medicine and Immunology.  Prior to joining Roswell Park in 2010, Dr. Griffiths completed a five year medical oncology and hematology fellowship at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital in Baltimore, MD.  Dr. Griffiths is board certified in hematology, oncology and internal medicine.

In this webinar, Dr. Griffiths gives a brief overview of what PNH is and how it affects patients, an update on the current treatment options for PNH patients and then answers more than a dozen questions from patients and family members.

Topic(s): Pediatric Bone Marrow Failure Diseases, Myelodysplastic Syndromes (MDS)

Eytan M. Stein, MD is a Oncologic Hematologist at Sloan Kettering emorial Cancer Center who specializes in caring for people with acute and chronic leukemias, myelodysplastic syndromes, and myeloproliferative neoplasms. He earned his medical degree from Northwestern University and is board certified in Internal Medicine, Medical Oncology, and Hematology. Dr. Stein is an active clinical researcher developing new and innovative approaches to treating acute myeloid leukemia (AML) and serves as the principal investigator on a wide variety of clinical trials. 

In this webinar, Dr. Eytan M. Stein discusses the important issues specific to young adults with MDS, from long-term prognosis and fertility concerns to next generation sequencing and clinical trial opportunities.
Topic(s): Bone Marrow Transplant, Aplastic Anemia, Myelodysplastic Syndromes (MDS)

Ryotaro Nakamura, MD is Professor, Department of Hematology & Hematopoietic Cell Transplantation; Director, Center for Stem Cell Transplantation at City of Hope. 

Dr. Nakamura discusses the how the best practices for treating aplastic anemia and MDS have changed to include transplant as a realistic option for many patients over 40.  With new conditioning regimes and improved matching, many patients can have a successful transplant well into their 70s.  Dr. Nakamura also gives an overview of how aplastic anemia and MDS affect the bone marrow, a critical part of the decisionmaking process for determining if a transplant is an option.  
 

Topic(s): Aplastic Anemia, Living Well with Bone Marrow Failure

Bhumika Patel, MD, is a board certified hematologist/oncologist who was appointed to the Cleveland Clinic Taussig Cancer Center in 2019, following two successful fellowships.  Dr. Patel is an active researcher, contributing to more than 40 studies over the last three years with a focus on bone marrow failure diseases.

In this webinar, Dr. Patel discusses the specific concerns of women living with aplastic anemia, from the newly diagnosed to longer-term survivors and includes a robust Q & A sessions with input from women living with aplastic anemia. 

Topic(s): Bone Marrow Transplant

Dr. Bhatt and Dr. Zimmer discuss important information about how and when to treat infectious disease in patients who have had a transplant. This webinar is appropriate for patients who are contemplating a transplant and those who have already had one. 

Vijaya R. Bhatt, MD, MBBS, is Assistant Professor, Internal Medicine in the Division of Oncology & Hematology and the University of Nebraska Medical Center. Dr. Bhatt sees patients at the Fred & Pamela Buffett Cancer Center where he specializes in hematopoietic stem cell transplant, post-transplant complications, graft-versus-host disease, leukemias, myeloid disorders and benign hematologic disorders. 

Dr. Bhatt is board certified in Hematology and Medical Oncology as well as being a well-regarded researcher.  He has published numerous journal articles, papers and analyses on topics including the treatment of infectious disease in transplant patients. 

Andrea Zimmer, MD, joins the webinar to provide her perspective in infection diseases. Dr. Zimmer is Assistant Professor, Department of Internal Medicine, Co-Director, Graduate Medical Education Curriculum, Microbiology & Infectious Diseases Block at the University of Nebraska School of Medicine.  Dr. Zimmer treats patients at the Fred & Pamela Buffett Cancer Center, providing guidance and support to patients and health care professionals in managing the risks of infectious disease.

Topic(s): Aplastic Anemia, Myelodysplastic Syndromes (MDS)

Tiffany N. Tanaka, MD, is a board-certified hematologist specializing in the diagnosis and treatment of blood cancers and blood disorders, with an emphasis on myeloid malignancies.  Dr. Tanaka provides an overview of the diagnostic and treatment considerations for patients who have aplastic anemia and hypoplastic MDS.  This overlapping set of bone marrow failure diseases raises critical questions for patients and health care professionals. 

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), Acute Myeloid Leukemia (AML)

Holly Comer, BSN, ANP-BC, has been an oncology nurse for 30 years and has been a nurse practitioner for the last 14 years.  Ms. Comer is with Siteman Cancer Center at Barnes-Jewish Hospital & Washington University School of Medicine where she has been part of the Bone Marrow Transplant team for the last 26 years. She also served as a nurse during the Gulf War. Ms. Comer is actively involved in clinical research, most recently serving as the principal investigator for "Bone Loss in Allogeneic Transplant Patients", the results of which will be covered during her webinar. 

Holly Comer, MSN, ANP-BC provides a thorough overview of the concerns of long term transplant survivors related to bone health and disease. Ms. Comer also provides an update on a recent study she led entitled "Bone Loss in Allogenic Transplant Patients".

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