Patient and Family Webinars

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.

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.

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.

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 

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.

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.

In this conference session, Dr. Lai discusses how to manage MDS in adults such as how it impacts a patient's life, treatment options, and additional topics.

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.

In this conference session, Dr. Ashkay 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.

In this conference session, Dr. Thota discusses what a patient may experience and expect when diagnosed with aplastic anemia and also what questions to ask your doctor.

In this conference session, Dr. Patel discusses the review of a PNH diagnosis, complications, and treatments for the disease.
 

In this webinar, Dr. David Beck, MD, PhD and Anna Cantor, MA, MS, CGC, discuss VEXAS syndrome which is a newly discovered auto-inflammatory condition affecting older adults.  VEXAS syndrome often overlaps with myelodysplastic syndromes (MDS) with autoimmune disorders (AD). The question-and-answer section is included in this recording.

In this webinar, Dr. Jaroslaw Maciejewski discusses the recent advances in treating PNH including treatments recently approved as well as what's in the pipeline. The recording includes the question and answer section.
 

In this webinar, Dr. Firas El Chaer discusses the diagnosis of secondary AML and how treatment options are decided. Secondary acute myeloid leukemia (AML) refers to a condition in patients who have had prior myelodysplasia (MDS), myeloproliferative disorder, or aplastic anemia that converts to myeloid leukemia. It can occur with or without treatment for those conditions, or as a result of previous exposure to a chemotherapy or radiation. Patients with secondary AML need treatment soon after diagnosis because the disease often progresses fast. This recording includes a question and answer section.

In this webinar, Dr. Elizabeth Griffiths 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) 2021 meeting in Atlanta, GA. 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.

In this webinar, Dr. Emma Groarke will discuss what is clonal evolution and potential impact for patients with aplastic anemia. She will answer questions from participants at the end of the presentation.

In this webinar, Dr. Edward Cowen will discuss cutaneous (skin) graft v host disease (GvHD) - a common post-transplant complication.  GvHD can affect different layers of the skin as well as the mouth, genitals, hair and sweat glands. Dr. Cowen will discuss diagnosis, the symptoms of skin GvHD and current treatment options. There will be a Q & A session at the end of the presentation. Questions can be submitted in advance to help@aamds.org. 

PLEASE NOTE: The slide presentation contains images that are graphic. Some of the images illustrate adult male and adult female genital GVHD which will be discussed in the presentation. This webinar is not recommended for children to participate. 

In this conference session, Dr. Amer Zeidan, MD discusses understanding the management options for higher risk MDS, the evolution of MDS to AML and more.

In this conference session, Dr. Anand Karnad, MD discusses best practices for treatment of PNH.