Paroxysmal Nocturnal Hemoglobinuria (PNH)

Inherited Bone Marrow Failure - From the 2024 Seattle Patient and Family Conference

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Topic(s)
Aplastic Anemia
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Pediatric Bone Marrow Failure Diseases
Related Bone Marrow Failure Diseases and Malignancies
Presenter(s)
Sioban Keel, MD
Which bone marrow failure conditions can be inherited? What is the likelihood of inheriting aplastic anemia, PNH, or MDS? Find out in this session that features Dr. Sioban Keel.

What is my Diagnosis? From the 2024 Seattle Patient and Family Conference

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Topic(s)
Acute Myeloid Leukemia (AML)
Aplastic Anemia
Myelodysplastic Syndromes (MDS)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Related Bone Marrow Failure Diseases and Malignancies
Presenter(s)
Bart Scott, MD
Dr. Bart Scott explains the diagnosis bone marrow failure diseases in this session from the 2024 Patient and Family Conference in Seattle, WA.

Jason Farrar, MD

Institution
Arkansas Children’s Hospital
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)
Pediatric

Nutrition and Bone Marrow Failure

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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
In this webinar, Doris Piccinin, registered dietician, will discuss how diet can play a role in living well with a bone marrow failure disease. You can submit questions in advance by emailing help@aamds.org.

Ashwin Kishtagari, MD

Institution
Vanderbilt University Medical Center
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)

David Hermel, MD

Institution
Scripps Clinic
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
David Hermel, MD, is a hematologist and medical oncologist who specializes in malignant hematology with an interest in the use of novel therapies, such as cellular immunotherapy and bone marrow transplantation, for the treatment of blood and immune system disorders. As a member of the Scripps Blood and Marrow Transplant Program, he works with a multi-disciplinary team of professionals to provide hematopoietic stem cell transplantation to his patients. Dr. Hermel’s clinical practice is focused on the treatment of blood cancers, such as acute and chronic leukemias, multiple myeloma, Hodgkin’s

Non-therapeutic Study: The purpose of a non-therapeutic study is to increase the understanding of a disease or condition through observation, data collection, or other methods. A non-therapeutic study does not provide treatment or intervention for participants. This type of research contributes to general knowledge that may benefit others in the future by improving treatment or developing new therapies. Home Reported Outcomes in PNH: A Mobile App-Based, Prospective, Observational Program to Evaluate Disease Burden and Treatment Patterns in Paroxysmal Nocturnal Hemoglobinuria in the US

Status
Enrolling
Study Date (Range)
-
Bone Marrow Disease(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Age Group
18 years and older
This study aims to capture the full spectrum of symptoms, treatment utilization, and overall Health-Related Quality of Life (HRQoL) experienced by PNH patients. As a participant, you will track what you're noticing about your health in the Folia Health app once per week for 6…

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