Patient and Family Webinars

This webinar focuses on the latest in research presented at the 2021 European Hematology Association(EHA) and American Society of Clinical Oncology (ASCO) annual meetings. Dr. Austin Kulasekararaj has selected a number of abstracts (research summaries) and provides a high-level assessment of new and ongoing research into treating  "> ">aplastic anemia and/or PNH.

This webinar is suitable for patients, families and caregivers who want to learn more about the implications of chemotherapy-induced peripheral neuropathy. Approximately 30% - 40% of patients who undergo chemotherapy for a bone marrow failure condition experience peripheral neuropathy and the effects can linger after completing treatment. Dr. Hammond will discuss the best treatment and management options for patients.

Constandina Herbert, MN, RN, BMTCN of the Fred Hutchinson Cancer Research Center will review all of the things that patients, families, and caregivers should know before undergoing a transplant. This interactive session will cover topics ranging from preparing the home for post-transplant recovery to recommendations for rehabilitative therapies and potential complications.  

This webinar is suitable for patients, families and caregivers who are considering transplant as a curative option for their bone marrow failure disease or those who have already undergone transplant. 

Dr. Yang will discuss the cardiac complications that can occur post-transplant and what pre-transplant diagnostic tests should be conducted and what the transplant team can do post-transplant to manage cardiac health. 

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 interactive session is a must-attend for all newly diagnosed PNH patients, family members, and caregivers. You will understand how your hematologist/oncologist diagnosed PNH, what treatment options are available based on your disease presentation, longer-term prognosis and what is in the clinical trials pipeline.

Dr. Celalettin Ustun is the Section Chief, Bone Marrow and Stem Cell Transplant at Rush University in Chicago. His presentation will focus on how and when transplant is an option for bone marrow failure patients, including the risks and benefits of various approaches to transplantation. Dr. Ustun will also share some of the latest advances in relapse prevention and in mitigating Graft vs Host Disease (GvHD) as well as new thinking in pre-transplant conditioning regimes.

Palliative medicine is specialized medical care for people living with a serious illness. Palliative or supportive care is focused on relieving the symptoms and improving the patient's quality of life. Many bone marrow failure disease patients receive palliative or supportive care throughout their treatment journey and Dr. Downer will discuss some of the best practices for our patients, family members, and caregivers. During this session, you'll learn about palliative or supportive care services that help other bone marrow failure disease patients and how this care can make you feel better and improve your quality of life.

This session is suitable for patients, family members, and caregivers who are living with a diagnosis of higher risk MDS and who may (or already have) transition to AML. Dr. Jay Lang will discuss how your hematologist/oncologist arrives at the diagnosis and how they determine the best course of treatment including an assessment of the factors that go into making that determination (i.e. age, overall health, IPSS-R score, mutations, availability of treatment options, patient preferences). He will also talk about transplant vs. non-transplant options and the prognosis for patients before, during and after treatment.

Daria Babushok, MD, PhD (PennMedicine) is a leading researcher and clinician in hematological malignancies and will provide a thorough overview of aplastic anemia, from diagnosis to treatment. This session is appropriate for patients, family members, caregivers and friends.

Suresh Balasubramanian, MD, with Karmanos Cancer Center, will provide a comprehensive overview of low risk myelodsyplastic syndromes (MDS).  This session is suitable for patients, family members, caregivers and friends who are newly diagnosed and those who have been living with MDS for years.

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 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.