Patient and Family Webinars

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.

When a child is diagnosed with a bone marrow failure disease, often the focus is soley on the child's medical care. This session will help parents, guardians and others who parent children with aplastic anemia, PNH, MDS, AML and other bone marrow failure conditions navigate the complexities of parenting the child undergoing treatment and any other children in the home. Please bring your questions and suggestions to this interactive session with a trained pediatric social worker.

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 who are dealing with graft vs host disease (GVHD) post-transplant for a bone marrow failure disease, those who are providing care to someone with GVHD and patients considering transplant who want to more about living with GVHD.  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 transplant 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. 

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 PNH 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 PNH 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. Shaffer provides an overview of the haploidentical transplant process and discusses how this treatment option might be right for some MDS patients. 

Dr. Brian Shaffer is a board certified hematologist specializing in bone marrow transplantation for leukemia, myelodysplastic syndromes (MDS), lymphoma and other bone marrow disorders.  He works with a team at Memorial Sloane Kettering Cancer Center to provide comprehensive cancer care to patients.  

Dr. Shaffer is a researcher as well as a clinician who focuses on the role of Natural Killer (NK) cells in outcomes after transplant.  NK cells are white blood cells that have anti-tumor and anti-infection properties.  Dr. Shaffer is also focused on improving outcomes for transplant patients without a matched sibling donor through his work as a principal investigator for a number of ongoing clinical trials. 

Lucy Godley, MD, PhD, (UChicago Medicine) discusses the connection between heredity and MDS. While MDS is most often not inherited, there are some genetic mutations and other genetic conditions that can lead to a diagnosis of MDS.

Tiffany Tanaka, MD (UC San Diego Health) helps MDS patients understand the most common mutations and how genetic testing can help patients get the best possible treatment. 

Session recorded as part of the Spring 2021 Virtual Patient & Family Conference. 

Join AAMDSIF's Leigh Clark for a panel discussion with two longer-term PNH patients, Marlena Connor and Jessi Hackney. Marlena and Jessi talk about their experiences as patients, what they wish they'd knowns when they were being diagnosed, what resources are important to them and how patients (and caregivers) can connect with others affected by PNH.

Dr. Ramy Hanna is an Assistant Clinical Professor of Medicine and Nephrology at the University of California Irvine UCI-Health. He is a clinician-educator who works at the intersection of patient education and research, participating in ongoing research into diseases of the kidneys (nephrology) as it relates to complement disorders such as PNH. Dr. Hanna is focused on working with underserved communities and the expanding field of Artificial Intelligence/Machine Learned related to improving the diagnostic process and treatment outcomes for patients.

Dr. Hanna discusses the special concerns that PNH patients have related to kidney disease, how the diagnostic process works and what treatment options are available now and in the pipeline.

Short telomere syndrome is a genetic mutation that has significant implications for MDS and AML patients. This webinar provides an overview of the subject and will address the specific impact for bone marrow failure disease patients. Our speaker, Mary Armanios, M.D., is the Clinical Director of the Telomere Center at Johns Hopkins, Associate Director of Cancer Research Career Enhancement, Sidney Kimmel Comprehensive Cancer Center, Professor of Oncology, Genetic Medicine, Molecular Biology and Genetics, and Pathology as well as an active researcher. Dr. Armanios focuses her research on disorders caused by telomere dysfunction and specific to this webinar, the implications for patients with MDS and AML.

This webinar focuses on the experience of caregivers who have been with their loved ones through the diagnosis, treatment and survivorship stages of bone marrow failure disease. We are grateful to our caregivers for sharing their time with us.