2024 Philiadelphia, PA, Patient and Family Conference
The conference was held over two days - Friday, July 19 from 2-7 PM ET and Saturday, July 20 from 8AM - 4 PM ET.
Watch these recordings from conference sessions:
Pediatric
Patient and Family Conferences
AAMDSIF hosts Patient and Family Conferences around the United States each year.
Caregivers - Take Care but HOW????
Topic(s)
Pediatric Bone Marrow Failure Diseases
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Aplastic Anemia
Myelodysplastic Syndromes (MDS)
Acute Myeloid Leukemia (AML)
Presenter(s)
Jane Meier Hamilton, RN, MSN
In this webinar, Jane Hamilton discusses how and why it is important for caregivers to practice self care. The entire interactive session was recorded.
Advances in Treating Pediatric Aplastic Anemia
Topic(s)
Pediatric Bone Marrow Failure Diseases
Presenter(s)
Susan Kirk, MSPAS, PA-C
In this webinar, Susan Kirk discusses the latest advances in treating pediatric aplastic anemia.
Susan Kirk, MSPAS, PA-C
Institution
University of Virginia School of Medicine
Physician Status
accepting new patients
Primary Disease Area of Focus
Pediatric
Ninth International Bone Marrow Failure Disease Scientific Symposium
Topic(s)
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Bone Marrow Transplant
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Pediatric Bone Marrow Failure Diseases
The biennial Symposium will bring together physicians treating these diseases; laboratory researchers studying genetics, genomics, and pathophysiology of bone marrow failure; and clinical investigators to discuss current areas of consensus and controversy, share recent research…
Medical Jargon Made Simple
Topic(s)
Related Bone Marrow Failure Diseases and Malignancies
Pediatric Bone Marrow Failure Diseases
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Bone Marrow Transplant
Aplastic Anemia
COVID-19
Living Well with Bone Marrow Failure
Myelodysplastic Syndromes (MDS)
Managing Your Treatment
Acute Myeloid Leukemia (AML)
In this webinar, Jennifer Lotter explains medical terms most commonly used with a diagnosis of aplastic anemia, MDS, and PNH.
Caregivers: What to Expect When Your Loved One is Diagnosed
Topic(s)
Related Bone Marrow Failure Diseases and Malignancies
Pediatric Bone Marrow Failure Diseases
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Bone Marrow Transplant
Aplastic Anemia
COVID-19
Living Well with Bone Marrow Failure
Myelodysplastic Syndromes (MDS)
Managing Your Treatment
Acute Myeloid Leukemia (AML)
Presenter(s)
Swapna Thota, MD
In this webinar, Dr. Thota will discuss what caregivers can expect when their loved one is diagnosed- symptoms and side effects of disease and treatments.
Volunteer
AAMDSIF depends on the commitment, creativity, talent and energy of its volunteers. They are our local ambassadors, and we rely on their event organizing skills to support patients, family and friends in their community.
What are Registries?
In the medical field, registries are systematic collections of data related to specific diseases, conditions, or treatments. They are databases designed to gather and store detailed information about patients' medical histories, diagnostic information, treatments, outcomes, and various other factors. The primary goal of medical registries is to advance medical research, improve patient care, and enhance healthcare practices by providing comprehensive and reliable data.