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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, 04/13/2024 - 12:15pm (EDT) Advances in Treating Aplastic Anemia Webinar: Advances in treating aplastic anemia
Thu, 04/18/2024 - 4:00pm (EDT) Understanding Secondary AML: High Risk MDS to AML Webinar: Understanding Secondary A-M-L and High Risk M-D-S to A-M-L

Watch Past Webinar Recordings

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): 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.

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): Paroxysmal Nocturnal Hemoglobinuria (PNH)

These three experts discuss new and upcoming treatments for PNH, or Paroxysmal Nocturnal Hemoglobinuria.

Topic(s): Myelodysplastic Syndromes (MDS)

Eunice Wang, MD of Roswell Park Comprehensive Cancer Center explains the challenges of living with High-Risk MDS during this recorded session.  Watch now for her presentation and the answers she gives to the attendees' questions.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH), Managing Your Treatment

This session features Dr. Bart Scott. He describes how PNH patients can live their best lives with treatments and disease management. Dr. Scott presented this session at the 2022 Buffalo Patient and Family Conference.

Topic(s): Aplastic Anemia

This session, recorded at the 2022 Buffalo Patient and Family Hybrid Conference, answers your many questions about aplastic anemia. The featured speaker is Dr. Elizabeth Griffiths.

Topic(s): Myelodysplastic Syndromes (MDS)

Amanda Przespolewski, DO, Roswell Park Comprehensive Cancer Center explains Low-Risk MDS challenges and treatments for patients.  Watch now to learn all about Low-Risk Myelodysplastic Syndromes.

Topic(s): Related Bone Marrow Failure Diseases and Malignancies, Pediatric Bone Marrow Failure Diseases, Bone Marrow Transplant, Aplastic Anemia, Myelodysplastic Syndromes (MDS), Acute Myeloid Leukemia (AML)

Dr. Hemant Murthy provides brief transplant overview and then answers questions from participants. He tackles common and uncommon questions during this presentation, essential for all potential transplant patients and families to learn.

Topic(s): Pediatric Bone Marrow Failure Diseases

Dr. Joseph Oved answers questions from participants. The webinar covers most of the most pressing questions from parents about the disease and treatment of their child with bone marrow failure disease.

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

Dr. Daria Babushok discusses the significance of PNH clones in the diagnostic assessment of patients with bone marrow failure and recognized indications for starting complement inhibitor therapy in PNH (Paroxysmal Nocturnal Hemoglobinuria). The question and answer session is included after the presentation in this recording.
#PNH #paroxysmalnocturnalhemoglobinuria 

Topic(s): Pediatric Bone Marrow Failure Diseases, Bone Marrow Transplant

In this conference session, Dr. Sharma discusses what causes severe aplastic anemia, bone marrow transplants for it and other forms of treatment when bone marrow transplants aren't the best solution.

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

In this two-part conference session, Dr. Brion Randolph discusses the process of transplant as a modality for treating aplastic anemia, MDS and PNH. In the second part of the session, Dr. Salil Goorha discusses possible complications and side effects of transplant as well as best practices to live well after transplant.

Topic(s): Pediatric Bone Marrow Failure Diseases

In this conference session, Dr. Wlodarski discusses the basics of Pediatric MDS, the differences between MDS in children and adults, and practical examples on GATA2 and SAMD9/9L.

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