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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

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): Pediatric Bone Marrow Failure Diseases

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. 

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Pediatric Bone Marrow Failure Diseases, Paroxysmal Nocturnal Hemoglobinuria (PNH), Bone Marrow Transplant, Aplastic Anemia, COVID-19, Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Managing Your Treatment, Acute Myeloid Leukemia (AML)

In this webinar, Jane Hamilton discusses the benefits of respite care for caregivers. Learn tips and tools to hire a respite worker, how to partner and share the care.

Topic(s): Managing Your Treatment

In this webinar, Joanna Myers Casale, RD, CSO, discusses how the foods patients choose can help them cope with side effects, such as loss of appetite, nausea, vomiting, diarrhea, chewing and swallowing difficulties, and taste changes. The recording includes questions from attendees.
 

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

Learn about living with High-Risk MDS, Myelodysplastic Syndromes in this session.  Learn about treatments and therapies for MDS and AML in this session with Dr. Namrata S. Chandok.
 

Topic(s): Bone Marrow Transplant

Bone marrow transplantation is rigorous, so understanding the challenges from the process is essential. Learn from Dr. Antonio Jimenez Jimenez all about what patients can expect when this treatment is selected.

Topic(s): Living Well with Bone Marrow Failure

The patient's life changes with diagnosis of any bone marrow failure disease. Learn how to adapt and thrive from Amber Thomassen, APRN-BC,  AOCNP, in this session recording.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Dr. Damian Laber anticipates all your questions about PNH, or Paroxysmal Nocturnal Hemoglobinuria, in this session recording.

Topic(s): Aplastic Anemia

What does it mean to be diagnosed with aplastic anemia?  Which treatments can be used?  How do you manage the disease?
Learn from Dr. Mark Goodman in the recording of this session.

Topic(s): Myelodysplastic Syndromes (MDS)

Mikkael Sekeres, MD, MS, explains Low-Risk MDS, or Myelodysplastic Syndromes, in this session.  This presentation reveals answers to most questions that patients and families have.

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

In this webinar, Dr. Phillip Scheinberg 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) 2021, European Hematology Association (EHA) 2022 and American Society of Clinical Oncology (ASCO)2022.  Research findings are explained along with the potential impact of this research on understanding and treating aplastic anemia and PNH. This is an advanced scientific presentation.
 

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

Dr. Sandrine Niyongere will gives a brief MDS overview and then answer questions from participants. This interactive webinar recorded patients asking questions that are answered directly by a MDS Expert. #MDS #myelodysplasia #bloodcancer

Topic(s): Living Well with Bone Marrow Failure, Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)

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 great webinar for people diagnosed with MDS or those who are providing care to someone with the disease.  We extend a special invitation to newly diagnosed patients to join us to learn more about living with the disease and to sign up for our MDS support group emails.  

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)

Dr. Mikhail Kogan, Medical Director of the GW Center for Integrative Medicine, discusses the differences between integrative, holistic and functional medicines and how they can be used to treat patients. The end of the webinar features questions from patients in the audience.

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

In this webinar, Dr. Jadee Neff will discusses how genetic testing used in the diagnostic process, how it can help identify possible causes of disease that inform decisions regarding appropriate therapies, identify potential donors for bone marrow transplant, and potential risk for comorbidities, She  answers questions from participants at the end of the presentation.

 

Topic(s): Aplastic Anemia

Patients may learn about a variety of treatments for aplastic anemia.  Sometimes the preference will be a non-transplant treatment. This webinar, which includes questions from the live audience at the end, describes the types of treatments and why each may be considered.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)
Topic(s): Living Well with Bone Marrow Failure

Program participants will learn the basics of Medicare including how and when to enroll, the different parts of Medicare, the difference between Advantage and Supplement plans and what original Medicare does not cover, eligibility, how to avoid penalties, when to qualify for disability after a blood cancer diagnosis and which part covers infusion versus which part covers pill medications.  This program is a must for anyone turning 65, over 65 and getting ready to retire, already on Medicare, or a caregiver for a loved one on Medicare.  

Topic(s): Bone Marrow Transplant

Has a bone marrow transplant been suggested as a treatment for aplastic anemia, MDS, or PNH?  George Chen, MD, explains why your specialists may recommend this treatment, along with risks and benefits.  He takes questions at the end of the recording from the attendees.

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

Megan Pailler, PhD, Assistant Professor of Oncology,  provides clinical assessment and intervention services to oncology patients on both an inpatient and outpatient basis. Her area of focus has been the hematological services, including leukemia, lymphoma, and bone marrow transplant, providing interventions for patients throughout the spectrum of transplant as an integrated member of the treatment team. Her research interests have focused on developing novel, empirically-based interventions for young adult cancer patients.

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