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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

Sat, 07/20/2024 - 9:45am (EDT) Low-Risk MDS Webinar: Low-Risk M-D-S
Sat, 07/20/2024 - 12:45pm (EDT) Nutrition and Bone Marrow Failure Nutrition and Bone Marrow Failure

Watch Past Webinar Recordings

Topic(s): Myelodysplastic Syndromes (MDS)

Lucy Godley, MD, PhD, (UChicago Medicine) discusses the connection between heredity and MDS. While MDS is most often not inherited, there are some genetic mutations and other genetic conditions that can lead to a diagnosis of MDS.

Topic(s): Myelodysplastic Syndromes (MDS)

This recorded session includes expert clinicians, a patient advocate, and a patient for “Establishing Goals of Therapy While Managing Myelodysplastic Syndromes,” an interactive discussion of MDS and potential treatment approaches.

This hour-long educational session helps patients and caregivers develop a clearer understanding of treatment options, side effects, quality-of-life changes, and financial impacts associated with myelodysplastic syndromes (MDS), as well as improving communication with the care team to set realistic expectations for treatment and access informative resources.

This program may help patients with MDS cope with feelings of anger, stress, and anxiety when diagnosed and throughout their disease course. It also provides guidelines for maintaining open communication among patients, caregivers, and the healthcare team, all essential for managing treatment.

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)

Tanya M. Bass, MS, MEd, CHES®, CSE, is a national award winning sexuality educator and a subject matter expert in the areas of health equity and sexual health. She is an alumna of North Carolina Central University’s (NCCU) Department of Public Health Education, where she has served as an adjunct instructor for the past 10 years. Currently, Tanya is the lead instructor for Human Sexuality and will be defending her PhD in early 2021. 

Ms. Cook provides an overview of the concerns that patients with bone marrow failure diseases should consider related to sexual intimacy.   

Please note that the content of this webinar may not be suitable for all ages. 

Topic(s): Bone Marrow Transplant, Myelodysplastic Syndromes (MDS)

Tiffany Tanaka, MD (UC San Diego Health) helps MDS patients understand the most common mutations and how genetic testing can help patients get the best possible treatment. 

Session recorded as part of the Spring 2021 Virtual Patient & Family Conference. 

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

Nathan Punwani, MD, (Cedars-Sinai) provides an overview of the treatment options for patients with higher risk MDS or who have transitioned to AML.  

Recorded during the Spring 2021 Virtual Patient & Family Conference. 

Topic(s): Bone Marrow Transplant

Ryotaro Nakamura (City of Hope) facilitates this session on the rapidly changing thinking about transplant options for patients with aplastic anemia, MDS and other bone marrow failure diseases.

Topic(s): Aplastic Anemia

Ronald Paquette, MD (Cedars-Sinai) presents an informative session on aplastic anemia and the overlapping conditions that are frequently part of the diagnosis and treatment journey. Recorded during the Spring 2021 Patient & Family Conference.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Ilene Weitz, MD (Keck Medicine, USC) talks about the latest thinking in PNH treatment and will announce a new AAMDSIF opportunity for PNH patients, family members and caregivers. 

Recorded at the Spring 2021 Patient & Family Conference. 

Topic(s): Bone Marrow Transplant

Dr. Cutler will discuss the many new advances in transplantation for patients with bone marrow failure diseases including treating GVHD post-transplant, the criteria by which patients are advised to consider transplant and the outcomes that patients who go to transplant can expect.  This is an especially relevant topic for those patients who are considering transplant now or in the near future. 

Topic(s): COVID-19

Dr. DeZern and Dr. Dioverti will provide a update on the global pandemic and the impact on patients with bone marrow failure conditions. 

This session will focus on answering the questions that patients, family members and caregivers have about vaccinations against COVID-19 for those living with bone marrow failure conditions.  

Participants will be able to submit their questions during the session via the Q & A window and we will do our best to get to all live questions.  To submit a question in advance, please send an email to

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

Dr.DiNardio provides a review of the most important papers and studies presented at the 62nd American Society of Hematology Annual Meeting for patients with AML secondary to MDS.  We will have a follow up webinar with a direct focus on lower and intermediate risk MDS papers and studies. 

Courtney D. DiNardo is an Associate Professor, Department of Leukemia, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX.  Dr. DiNardo is a clinical researcher with a specialized focus on prognostication and personalized therapeutics for patients with myeloid malignancies. She has completed formal training in epidemiology and biostatistics, with a Master's of Science in Clinical Epidemiology (2012). She is the principal investigator for multiple novel therapeutic agents currently in clinical trial and was involved in the clinical development of venetoclax for myeloid malignancies.  Dr. DiNardo is an internationally recognized researcher and clinician. 

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

Dr. Cook gives a broad overview of bone marrow disorders including what causes them, how they are diagnosed and what treatment paths are available to patients.

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), Managing Your Treatment, Acute Myeloid Leukemia (AML)

Dietician Joanna Myers Casale provides a brief overview of recommended dietary needs for bone marrow failure patients and then answers questions posed by the audience.   

Joanna Myers Casale is a registered dietician who serves as Oncology Dietician at the MD Anderson Cancer Center at Cooper in Camden, New Jersey.  She earned a B.S. in Clinical Dietetics & Nutrition from the University of Pittsburgh where she graduated magna cum laude. Ms. Casale is a board certified specialist in oncology nutrition by the Commission on Dietetic Registration. 

At the MD Anderson Cancer Center at Cooper, Ms. Casale works with hematology and oncology patients to support them during their treatment and reduce side effects. She also educates her patients on foods to support their immune system and recovery.  

She is a member of the American Society for Parenteral and Enteral Nutrition and the Academy of Nutrition and Dietetics, including the Oncology Nutrition Practices Group.  



Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH), Myelodysplastic Syndromes (MDS)

Dr. Navada discusses the overlap between MDS and PNH including the diagnosis process and best practices in treatment.  While this is a very rare overlap, it's important for MDS and PNH patients to be aware of the possibility. Participants will have the opportunity to ask questions during the session.

Shyamala Navada, MD, is Associate Professor of Medicine (Hematology and Medical Oncology) at the Icahn School of Medicine at Mount Sinai (Icahn) and a faculty member of The Tisch Cancer Institute.  She has served as principal investigator on multiple investigator-initiated and industry-sponsored trials. Dr. Navada earned her M.D. from the University of Illinois and holds a Master of Science degree in Clinical Research from Icahn.

Dr. Navada has presented her research at national and international conferences, including the American Society of Hematology annual meeting, International Bone Marrow Failure Disease Scientific Symposium, International Symposium on Myelodysplastic Syndromes, and European Hematology Association Congress. 

Dr. Navada will be joining the AAMDSIF Patient Education Council in 2021 as an expert advisor on the Foundation's educational programming. 

Topic(s): Acute Myeloid Leukemia (AML)

Dr. Arellano gives a presentation treating older adults with acute myeloid leukemia (AML) including a review of the newest treatment options, how healthcare professionals determine what the best treatment plan is for older adults and what the prognosis is for patients diagnosed with AML.  

Martha L. Arellano, MD, is an Associate Professor in the Department of Hematology and Medical Oncology at the Emory University School of Medicine where she serves as Interim Associate Director in the Division of Hematology.  Board certified in hematology, medical oncology and internal medicine, Dr. Arellano specializes in the treatment of leukemia and myelodysplastic syndromes. She started practicing with Emory Healthcare in 2006.

Dr. Arellano is a clinical member of the Discovery and Developmental Therapeutics Research Program at Winship Cancer Institute of Emory University. She currently leads the Department of Hematology and Medical Oncology's Fellowship program.

Dr. Arellano earned her medical degree from Emory University School of Medicine in Atlanta, Georgia. She went on to complete her internship and residency at Emory University Hospital in Atlanta, Georgia. 

Dr. Arellano's areas of research interest include adoptive immunotherapy for hematopoietic malignancies, novel therapies for acute leukemias and myelodysplastic syndromes, and palliative and supportive care.

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)

Mikhail Kogan, Medical Director of the GW Center for Integrative Medicine, gives an updated presentation on how complementary and alternative therapies can be used to help bone marrow failure disease patients. Participants 

Mikhail Kogan, MD, ABIOM, RCST is a leader in the newly established field of Integrative Geriatrics.  He is the chief editor of the first definitive textbook of the field "Integrative Geriatric Medicine" and is a regular speaker on the subject at international conferences.  He serves as the Medical Director of the GW Center for Integrative Medicine and is associate director of the Geriatrics Fellowship Program.  

Topic(s): Myelodysplastic Syndromes (MDS)

Leigh Clark, AAMDSIF Patient Educator, leads a panel of MDS patients to discuss their patient journey.  This interactive panel covers everything from diagnosis and clinical trials. Join Shirley O'Brien and Lou Auerbach for a lively discussion about their experiences!

Topic(s): Bone Marrow Transplant

Leigh Clark, AAMDSIF's Patient Educator, moderates a panel of bone marrow failure disease patients (and parent) who have had a transplant as part of their treatment journey. They discuss how they made the decision to have the transplant, what side effects they've experienced and how they're doing today.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Join AAMDSIF's Leigh Clark for a panel discussion with two longer-term PNH patients, Marlena Connor and Jessi Hackney. Marlena and Jessi talk about their experiences as patients, what they wish they'd knowns when they were being diagnosed, what resources are important to them and how patients (and caregivers) can connect with others affected by PNH.

Topic(s): COVID-19

AAMDSIF Medical Advisory Board members Mikkael Sekeres, MD, Valeria Santini, MD and Uwe Platzbecker, MD provide a global update on COVID-19 including important reminders to patients about how to keep themselves safe and the prospective vaccines that are in development.

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