living with disease

Parenting a Child with Bone Marrow Failure Disease - Summer 2021 Conference

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Topic(s)
Pediatric Bone Marrow Failure Diseases
Presenter(s)
Jennifer Hoag, PhD
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…

Swapna Thota, MD

Institution
University of Tennessee
Physician Status
accepting new patients
Primary Disease Area of Focus
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Myelodysplastic Syndromes (MDS)
Myeloproliferative Neoplasms (MPN)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
About
As a physician caring for patients with acute leukemias and related disorders, I have a sustained focus on translational research in hematologic malignancies. Genomic sequencing technology revolutionized our understanding of cancer biology. My research focuses on exploring the dynamic changes of tumor immune microenvironment with clonal evolution of myeloid malignancies. Targeting inflammaging of bone marrow to impede clonal evolution is my ultimate professional goal and there by improve the survival rate for leukemia patients. My long-term goal is to develop potentially less toxic targeted

This is Your Brain on (Chemo) Drugs - Summer 2021 Conference

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Topic(s)
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Bone Marrow Transplant
Living Well with Bone Marrow Failure
Managing Your Treatment
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Pediatric Bone Marrow Failure Diseases
Related Bone Marrow Failure Diseases and Malignancies
Presenter(s)
Jorg Dietrich, MD, PhD
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.

Understanding GVHD

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Topic(s)
Bone Marrow Transplant
Presenter(s)
Catherine J. Lee, MD
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…

Catherine Lai, MD, MPH

Institution
University of Pennsylvania’s Perelman Center for Advanced Medicine
Physician Status
available for consultation
About
Dr. Lai's clinical expertise is in Blood and Marrow Transplantation (BMT). She specializes in autologous and allogeneic hematopoietic cell transplants for the treatment of malignant and benign hematologic diseases in adult patients. She conducts her research in the Medicine Division of Hematology/BMT at the Huntsman Cancer Center. She specializes in detecting, monitoring, and treating acute leukemias and myeloid malignancies in adults. Previously at the National Institutes of Health (NIH) and Medstar Georgetown University Hospital, she focused on clinical trials in acute leukemias.

Alexion Announces FDA Approval of ULTOMIRIS® (ravulizumab-cwvz) for Children and Adolescents with Paroxysmal Nocturnal Hemoglobinuria (PNH)

Original Publication Date
Article Source
External Web Content
– With this approval, ULTOMIRIS is the first and only medicine approved in the U.S. to treat children and adolescents with PNH – – Approval based on interim results from Phase 3 study showing ULTOMIRIS demonstrated complete terminal complement inhibition through 26 weeks – BOSTON…

Living with GVHD: A Transplant Patient Panel Discussion

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Topic(s)
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Bone Marrow Transplant
Living Well with Bone Marrow Failure
Managing Your Treatment
Myelodysplastic Syndromes (MDS)
Related Bone Marrow Failure Diseases and Malignancies
Presenter(s)
Leigh Clark
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…

Living with PNH: A Patient Panel Discussion

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Topic(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Presenter(s)
Leigh Clark
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…
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