Patient and Family Webinars

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.

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.