Patient and Family Webinars

Suneet Agarwal, MD, PhD from Boston's Children's Hospital provides essential information for families about inherited bone marrow failure disorders in this session from the Patient and Family Conference in Salt Lake City, UT, 2023

In this webinar, Dr. Gail Roboz discusses the Molecular International Prognostic Scoring System (IPSS-M) which is a newly developed risk stratification model for myelodysplastic syndromes (MDS) that expands on the original IPSS-R by including data on somatic oncogenic mutations across 31 gene families and weighing their impact on prognosis and outcomes.  

Dr. Emma Groarke discusses research most relevant to patients reported over the past year on the biology and treatment on Aplastic Anemia and PNH. These studies were presented at the American Society of Hematology (ASH) 2022 meeting and their findings will be explained along with the potential impact of this research on understanding and treating aplastic anemia and PNH. This is an advanced scientific presentation. The final question and answer section is included in the recording.

Dr. Salman Fazal will gives a brief AML overview and then answers questions from participants. The question and answer session is recorded here.

High Risk MDS Non-Transplant Therapies Current Therapies and Clinical Trials with Dr. Prajwal Dhakal

Learn how to manage your PNH, or paroxysmal nocturnal hemoglobinuria,  symptoms and complications with the instruction from this session of the 2023 Omaha Patient and Family Hybrid Conference.

This session explains why and how patients may be offered a transplant to treat MDS, or myelodysplastic syndromes, or severe aplastic anemia. Dr. Gundabolu also answers questions from the live audience.

Dr. Vijaya Bhatt discusses Low-Risk MDS in accessible terminology during this session from the 2023 Omaha, NE, Patient and Family Hybrid Conference.

Watch this session to learn techniques for coping after the diagnosis of a bone marrow failure disease such as aplastic anemia, MDS, or PNH.  The session is useful for all bone marrow failure disease patients.

From the 2023 Omaha Patient and Family Hybrid Conference: PNH Non-Transplant Therapies with Dr. Alex Nester. Learn symptom management and options for therapies in this session which includes questions from the audience.

The patient panel discusses this essential topic: Barriers and Challenges to accessing care.  Learn their techniques for overcoming these barriers in this session from the Patient and Family Conference.

Watch this session, featuring Dr. Srinivas Tantravahi, to learn more about different treatment options for patients with aplastic anemia.

In this webinar, Dr. Lourdes Mendez discusses research most relevant to patients reported over the past year on the biology and treatment on MDS and secondary AML. These studies were presented at the American Society of Hematology (ASH) 2022 meeting.  Research findings are explained along with the potential impact of this research on understanding and treating MDS and AML. This is an advanced scientific presentation. The question and answer session is included in this recording.

Dr. Patel explains the challenges and successes for treating aplastic anemia when diagnosed in an older adult. The recording includes an extensive question and answer section with the virtual attendees.
 

Thomas G. DeLoughery, MD, MACP, FAWM, answers questions from the live, online audience in this recording on PNH, or Paroxysmal Nocturnal Hemoglobinuria.

Listen to these patients with aplastic anemia describe their challenges and joys in this recent webinar recording.

Areej El-Jawahri, MD, and Elyse R. Park, PhD teach patients coping strategies and practical tips for easing the stress of living with a bone marrow failure disease. Patients with aplastic anemia, PNH, or MDS benefit from viewing this recorded program.  
 

Dr. Naval Daver describes recent research and upcoming treatments for MDS presented at the ASCO and EHA 2022 meetings. Discover how the understanding of MDS, or Myelodysplastic Syndromes, has advanced as well as possible new treatments in this recording.