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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

There are currently no upcoming webinars scheduled.

Watch Past Webinar Recordings

Topic(s): Myelodysplastic Syndromes (MDS)

In this webinar, Jennie Vagher, certified genetic counselor, discusses hereditary or genetic predisposition to MDS. Jennie is an expert in rare cancer predisposition syndromes.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Dr. Taha Bat explains extravascular hemolysis, focusing on PNH (Paroxysmal Nocturnal Hemoglobinuria). This session is important for anyone affected by PNH.

Topic(s): Living Well with Bone Marrow Failure

In this webinar, Dr. Nathan Handley discusses what is integrative medicine and how it can be part of your treatment plan. He answers audience questions in the recording.

Topic(s): Myelodysplastic Syndromes (MDS)

In this webinar, Drs. Kelly Bolton and Eytan Stein discuss CCUS (clonal cytopenia of undetermined significance) and the connection to MDS.

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, Jennifer Lotter explains medical terms most commonly used with a diagnosis of aplastic anemia, MDS, and PNH. 

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

In this webinar, Jane Hamilton discusses how and why it is important for caregivers to practice self care. The entire interactive session was recorded.

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, Dr. Thota will discuss what caregivers can expect when their loved one is diagnosed- symptoms and side effects of disease and treatments.  

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

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. Bonnie will also discuss what is new in 2024 for Medicare. 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): Myelodysplastic Syndromes (MDS)

Dr. Lourdes Mendez explains High-Risk MDS, or Myelodysplastic Syndromes, in detail for patients and families from the 2023 Patient and Family Conference in New Haven, CT.  Learn about this condition and treatment options by watching now.

Topic(s): Aplastic Anemia

Dr. Nikolai Podoltsev presents this session for Aplastic Anemia non-transplant therapies.

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

Dr. Mina Xu discusses the steps involved in developing an accurate diagnosis for bone marrow failure diseases.

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

Lisa Barbarotta describes techniques to help manage low blood counts in this session.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Dr. Nicolai Podoltsev describes options available for patients with PNH who could choose non-transplant treatments.

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

Dr. Lai discusses the latest research presented at the 2023 EHA and ASCO meetings. This is an advanced educational presentation. 

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

Learn about biosimilars, biosimilar medications, and their use for bone marrow failure disease treatments from Cate Lockhart, MS, PharmD, PhD.

Topic(s): Aplastic Anemia

Learn about treatments that may be recommended for the treatment of Aplastic Anemia, exclduding bone marrow transplantation, from this Patient and Family Conference Presentation. The presenter is Candido Rivera, MD.

Topic(s): Aplastic Anemia

Learn about treatments that may be recommended for the treatment of Aplastic Anemia, excluding bone marrow transplantation, from this Patient and Family Conference Presentation. The presenter is Candido Rivera, MD.

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

PNH patients discuss their PNH journey by sharing their stories and answering questions from other PNH patients. 

Topic(s): Myelodysplastic Syndromes (MDS)

The panelists are individuals who are living with MDS, or Myelodysplastic Syndromes.
Watch and learn from their own experiences.
#MDS  #bloodcancer 

Topic(s): Paroxysmal Nocturnal Hemoglobinuria (PNH)

Dr. Caroline Piatek defined PNH, how PNH is diagnosed, the available treatment options, and side effect management. She also answered questions about PNH (Paroxysmal Nocturnal Hemoglobinuria.)

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