9am What Caused My Bone Marrow Failure Disease: Acquired vs Genetic
Seth Corey, MD, MPH (Cleveland Clinic), will lead an informative session for patients of all ages about the causes of bone marrow failure diseases like aplastic anemia, PNH, MDS and AML. Dr. Corey will explain the difference between acquired and genetic disease, how that difference can affect treatment options and prognosis.
10am What's New in PNH? New Treatment Options and Clinical Trials
Jaroslaw Maciejewski, MD, PhD and Bumikha Patel, MD (Cleveland Clinic), will give an important update for PNH patients and families on new treatment options as well as promising drugs currently in clinical trial. Dr. Maciejewski will answer the most pressing questions that all PNH patients need to know.
11am Understanding MDS Mutations and Risk Scores
Hetty Carraway, MD (Cleveland Clinic) will lead an informative session for MDS patients who want to know more about how genetic mutations can affect treatment options and how doctors evaluate the risk of MDS progression based on international criteria.
12pm Aplastic Anemia: Transplant vs Non-Transplant Treatment Options
Rabi Hanna, MD (Cleveland Clinic) will help aplastic anemia patients and families understand the treatment options including new thinking on transplants from alternative donors for patients with acquired aplastic anemia. Dr. Hanna will also give an update on the most promising developments currently in clinical trial.
1pm Improving the Quality of Your Life: Survivors, Caregivers and Friends
Staci Arnold, MD, MBA, MPH (Emory University) will share her extensive research on what quality of life outcomes are most important to bone marrow failure disease patients and families and how to make your life better during diagnosis, treatment and survivorship. Dr. Arnold will also take questions from participants during the session.
2pm Patient Panel Discussions: Candid Conversations about Life with Bone Marrow Failure
Dr. Seth Rotz and Taylor Buss, Pediatric Oncology Social Worker (Cleveland Clinic), will lead a panel discussion with youth and young adult patients with bone marrow failure disease. Dr. Rotz will give introductory remarks and then we will hear from several patients who are either just beginning their treatment or who have recently finished.
3pm How to be a Survivor
Dr. Stefanie Thomas and Taylor Buss (Cleveland Clinic) will lead a panel discussion with youth and young adult patients ages 15 - 29 who are post-treatment and looking ahead to their futures. They will discuss everything from protecting fertility to navigating healthcare as a survivor to talking with your friends about your disease.
4pm Patient Support Groups (concurrent)
Faculty Director: Rabi Hanna, MD, Cleveland Clinic
JOINING THE CONFERENCE IS EASY!
AAMDSIF is using Zoom for the Fall Virtual Patient & Family Conference with options for joining sessions via your desktop, laptop, tablet, mobile device or by telephone. Zoom is free and works on most devices. We have two links to participate in this Conference, one for attending sessions and a second for Patient Support Groups.
WHO ELSE IS GOING TO THE CONFERENCE?
AAMDSIF Conferences are open to patients, families, caregivers and friends who are living with bone marrow failure disease including aplastic anemia, Myelodysplastic Syndroms (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), Acute Myeloid Leukemia (AML) as well as those who have had or are considering a Bone Marrow Transplant. Other bone marrow failure diseases and health concerns related to all bone marrow failure diseases will also be included.
AAMDSIF is pleased to partner with the Cleveland Clinic for the Fall Virtual Patient & Family Conference and we are thankful to Dr. Rabi Hanna for his leadership in recruiting faculty to make this a great experience for our patients and their loved ones.
FOLLOW OUR FACULTY ON TWITTER!
Did you know that many of the leading hematologists/oncologists are on Twitter? You can follow AAMDSIF and any of our faculty using these links!
Dr. Rabi Hanna
Dr. Seth Rotz
Dr. Seth Corey
Dr. Stefanie Thomas
Dr. Hetty Carraway