Webinars

MDS/MPN overlap syndromes have long been difficult to define and diagnose since they were discovered.  They have similar features, symptoms and test results to other myeloid neoplasms like MDS and MPN which makes it hard to diagnose.  By using next generation sequencing, hematologists/oncologists are able to better understand these syndromes and plan a course of treatment that is more effective and has better outcomes. 

Dr. Hunter will review changes in understanding clinicians and researchers have about diagnosing and treating these overlapping syndromes (including chronic myelomonocytic leukemia, juvenile myelomonocytic leukemia, atypical chronic myeloid leukemia, MDS/MPN with ring sideroblasts and thrombocytosis and MDS/MPN unclassifiable).  This session will also include a live Q & A session.  You are invited to submit your questions in advance to help@aamds.org. 

Eloy Roman, MD, PA with Lakes Research will discuss the recent advances in treating PNH including drugs recently approved as well as what's in the pipeline.  This session is ideal for PNH patients, family members, and caregivers.

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 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. 

This is a great webinar for parents, guardians, family members and caregivers of pediatric patients. If a child in your life was recently diagnosed, we extend a special invitation to join us to learn more about living with the disease and to sign up for our pediatric parent support group emails.  

As always, our panelists cannot provide you with medical advice and we encourage you to ask your treating hematologist or oncologist about your specific health needs. 

Dr. Rabi Hanna, Dr. Kate Eshleman and Taylor Buss from the Cleveland Clinic will participate in a panel discussion about the concerns and considerations for returning to school in the COVID-19 pandemic era.  Dr. Hanna will give an overview of the recommended precautions for families with school-age children and what factors to consider for returning to in-person schooling.  Dr. Eshleman and Ms. Buss will discuss the psychological factors that families should address when making their decisions about returning to school.  

This session will also include a live Q & A session.  You are invited to submit your questions in advance to help@aamds.org. 

This recorded webinar is suitable for patients, families and caregivers who want to learn more about participating in clinical trials. Our patient panel includes current and former clinical trial participants who will share their experiences.  New treatment options are being developed every year thanks to dedicated researchers and study participants who are working to find curative treatments for bone marrow failure diseases. 

Watch the recording on-demand:

CURE® invites you to connect with our community of leukemia experts and advocacy group speakers, led by summit chair, Naval G. Daver, MD of The University of Texas MD Anderson Cancer Center, who will empower your cancer journey. Watch the Educated Patient® Leukemia Summit now.

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 pre-recorded webinar for people diagnosed with MDS or those who are providing care to someone with the disease.  

Please note that this session may not be suitable for younger attendees however the content discussed will be relevant to all patients and their loved ones. Relationships are complex and complicated when partners are in the best of health. When someone you love is diagnosed with a bone marrow failure disease, those relationships can be tested and tried in ways that can bend or break even the strongest partnerships. This pre-recorded session will discuss how patients and their loved ones can navigate their journeys, how therapy can be helpful and what tools and tips our expert has for living your best life with your loved one.

The is a pre-recorded session with the original PNH Registry Launch video and audience Q & A. 

Aplastic anemia has been treated successfully since the 1970s with immunosuppressive therapy (ATG) and more recently with hematopietic cell transplantation. Unfortunately, some patients have a relapse where the disease characteristics and symptoms return after there’s been a period of remission.  Others do not respond to one type of treatment and they have to try another method.  This session will cover best practices in treating aplastic anemia that has relapsed or is refractory.  This session is suitable for all patients, family members and caregivers.

This is an introductory session for newly diagnosed PNH patients, for patients who are hoping to get a refresher on their disease and for the family members and caregivers of PNH patients. Topics covered will include how hematologists/oncologists accurately diagnose PNH, what the current and near-future treatment options are for PNH patients, an update on the Global PNH Patient Registry and what clinical trials are currently underway for PNH patients.

Paroxysmal Nocturnal Hemoglobinuria (PNH) is extraordinarily rare and qualified hematologists/oncologists with expertise in PNH are equally hard to find.  Fortunately, AAMDSIF has secured Dr. Carlos De Castro (Duke University School of Medicine) to provide an update on how to best manage PNH from the patient's perspective along with insight into new treatment options that are in the pipeline that may provide some hope for PNH patients experiencing complications with their disease. 

This session has been designed for the parents, guardians and adult family members of pediatric bone marrow failure disease patients. Drs. Olson and Shimamura will spend the entire session answering your specific questions which you can submit live or in advance to help@aamds.org. Some of the topics we expect to discuss include: * Explaining the diagnosis to siblings and other younger family members * How support groups work for patients under 18 * What should families consider in terms of fertility preservation and future family planning? * What are some of the longer-term consequences of going to transplant? * Getting a second opinion while getting care closer to home - how does it work, who can help? * Are there any other diseases/conditions that may occur later in life? * How do we best handle the transition from pediatric hematologist/oncologist to adult provider? * Getting the COVID-19 vaccine ... what do you think?

Patients who have been diagnosed with higher risk MDS or even AML secondary to an MDS diagnosis are often overwhelmed by online information about prognosis and treatment options while managing side effects. This session will help you understand what you need to know about your diagnosis, how to work with your treating hematologist/oncologist to make decisions that reflect your wishes and what new options are most promising for patients.

This session is designed for newly diagnosed MDS patients who want to understand what their options are for treatment, including how their specific mutations may influence the treatment path recommended by their treating hematologist/oncologist. This session is also a great refresher course for patients who have been diagnosed for some time, those who may have discovered that they have an overlapping condition such as an aplastic anemia patient who now also has MDS or for family members and caregivers who are trying to better understand their loved one's diagnosis.

This session is designed for newly diagnosed aplastic anemia patients, family members and caregivers and is a great refresher course for longer-term patients. You will learn about the standard tests used to diagnose aplastic anemia and see what your cells look like under the microscope. The session will also cover the treatment options available as well as those that are currently being studied in clinical trial and may be available in the near future. This session was recorded at the Summer 2021 Patient & Family Conference. 

When someone is diagnosed with a bone marrow failure disease, one of the first questions asked is "how long do I have to live". This recorded session from the Summer 2021 Patient & Family Conference will help you understand how your treating hematologist/oncologist comes up with a number of years or months and what factors can change that expectation - from treatment to lifestyle improvements.

Dr. Jorg Dietrich will help patients and their loved ones understand the chemistry and biology behind what happens to patient brains when chemotherapy and other treatments are introduced. This is a great session for caregivers, family members and patients.

This is a fun and interactive session for patients, family members and caregivers who are affected by bone marrow failure disease recorded during the Summer 2021 Patient & Family Conference.  You will learn about safe and appropriate exercise options and diets specific to your disease(s) and what not to do.

As always, please consult your treating hematologist/oncologist for approval of any change in your diet and exercise plan. The recommendations in this session will be general and not right for everyone.