The AAMDSIF National Patient & Family Conference was held virtually over three days, from Friday, July 17, 2020 through Sunday, July 19, 2020.
The Conference platform will be available through July 2021 and all sessions and speaker presentations are available on-demand on the platform.
You are welcome to register anytime between now and July 2021 to watch these sessions at your convenience.
Friday, July 17, 2020
12:00pm: Welcome & Opening Remarks featuring Kevin Lyons-Tarr (Board Chair) and Connie Britton (actress)
12:15pm: Concurrent Sessions :
* Blood Transfusions, Iron Overload and Treatment Options
* Should I Enroll in a Clinical Trial? Stories from Participants
* Pediatric Bone Marrow Failure Diseases: A Special Session for Kids
1:30pm: Concurrent Sessions:
* Managing Fatigue and Other Side Effects
* Role of Complementary and Alternative Medicine
* Kids Only: Tik Tok Challenge (in the Lounge)
Children's programming is sponsored by a generous donation from Westside Donut Ventures in memory of Drew Stablen
2:45pm: Closing Plenary Session featuring Mikkael Sekeres, MD
4:00pm: Patient Support Group - Aplastic Anemia
Saturday, July 18, 2020
12:00pm: Welcome & Keynote Speaker (Congresswoman Doris Matsui)
12:15pm: Plenary Session: A Survivor's Journey - a Conversation with Robin Roberts and Gail Roboz, MD
12:45pm: Concurrent Sessions :
* Aplastic Anemia: A Patient Centered Approach to Diagnosis and Treatment
* PNH: A Patient Centered Approach to Diagnosis and Treatment
* Living with Low Risk MDS: What Are Your Options?
2:00pm: Keynote Speaker: David Fajgenbaum, MD "Chasing My Cure"
2:45pm: Concurrent Sessions:
* Aplastic Anemia and Overlapping Diseases: Understanding the Risks and Treatment Options
* The Changing Landscape for PNH Patients: Selecting the Right Treatment Option
* Moderate and High Risk MDS: A Patient Centered Approach to Diagnosis and Treatment
4:00pm: Patient Support Group - MDS (start time approximate)
Sunday, July 19, 2020
12:00pm: Concurrent Sessions:
* Long Term Survivors and Bone Marrow Transplants: The Risks, the Rewards and What You Should Know
* Financing Your Rare Disease: Navigating Insurance and Patient Assistance Programs
1:15pm: Concurrent Sessions:
* Caregivers: Taking Care of Yourself While Caring for Others
* How Long Do I Have to Live? Prognosis for Bone Marrow Failure Diseases
2:30pm: Closing Plenary Session & AAMDSIF Leadership Awards
3:30pm: Patient Support Group - PNH
HOW TO ATTEND?
The 2020 National Patient & Family Conference will be held virtually in order to protect our entire AAMDSIF family in light of the coronavirus (COVID-19) pandemic. Please register using the REGISTER button above.
TECHNOLOGY CHECK IN:
You will need an internet connection and a device (computer, laptop, tablet or smartphone) that allows you to watch videos and navigate around the platform. Please be advised that you will need to enable pop-ups to enjoy the full conference experience including participating in session Q & A, our trivia competition, our lounge area, patient support groups and more. Please click here to do a quick check and adjust your system in advance of the Conference!
WHO SHOULD ATTEND?
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.
SPECIAL CONFERENCE MUSIC
AAMDSIF is pleased to announce that noted American pianist George Winston has graciously provided the music for the 2020 AAMDSIF National Patient & Family Conference. Mr. Winston notes that his composition Venice Dreamer, Part 2 is "in memory of my dear friend, David Fleck, an incredible person and music lover who passed on at a younge age of cancer in 1982".