Patient and Family Webinars

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 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.

In this conference session, Dr. Ruben Mesa, MD discusses the different features between MDS and MPN and their overlap syndromes.

In this conference session, Dr. Elizabeth Cowhay Barnes discusses diagnosis and treatment of aplastic anemia.

In this conference session, Dr. Krisstina Gowin DO discusses best practices when living with bone marrow failure diseases.

In this webinar, Dr. Sandeep Jain will discuss the diagnosis and treatment of ocular GvHD which occurs in 40-60% patients following an allogenic transplant. Ocular GVHD may lead to severe ocular surface disease, which can significantly diminish quality of life and restrict daily activities. He will answer questions from participants at the end of the presentation.

In this webinar Drs. Linda Burns and Nandita Khera will discuss the advances in transplantation for older patients with MDS. Stem cell transplants are not frequently offered to older patients with high-risk myelodysplastic syndromes (MDS). According to a study from the Blood and Marrow Transplant Clinical Trials Network (BMTCTN 1102), older patients with MDS may indeed achieve a survival benefit from stem cell transplant. At the end of the webinar, there will be a questions and answer session. Questions can be submitted in advance at help@aamds.org.

In this webinar, Dr. Satheesh Chonat will discuss what is PNH, how PNH is diagnosed and what treatment options are available to pediatric patients.  After the presentation, Dr. Chonat will answer questions from participants. Advance questions can be submitted to help@aamds.org. 

In this discussion, Dr. Nandita Khera of Associate Professor of Mayo Clinic and Dr. Linda Burns Sr. Scientific Director of CIBMTR discuss which treatments are available to older MDS patients. 

Dr. Catherine Lee will provide a comprehensive overview of chronic and acute graft vs host disease ("GvHD") which is a complication of bone marrow transplant.  While some patients have very mild GvHD, many patients have more severe and long term disease.  Dr. Lee will discuss pre-transplant prevention and post-transplant management of GvHD. 

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

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.