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Transplant for MDS, or Myelodysplastic Syndromes, from the Patient and Family Conference, Utah, 2023
Ryotaro Nakamura, MD, City Of Hope, explains the reasons why the specialist may recommend a
bone marrow transplant
bone marrow transplant:
A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure.…
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Paul J Shami, MD of Huntsman Cancer Institute describes the types of therapies that may be used in treating MDS, or
Myelodysplastic Syndromes
Myelodysplastic Syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means…
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Dr. Emma Groarke discusses research most relevant to patients reported over the past year on the biology and treatment on
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is…
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Watch this informative patient panel from the 2023 Patient and Family Conference in Salt Lake City, Utah. This session was led by Jill Gahlsford, RN, of Huntsman Cancer Institute.
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Addressing Barriers and Challenges to Patient Care - 2023 Omaha Patient and Family Hybrid Conference
The patient panel discusses this essential topic: Barriers and Challenges to accessing care. Learn their techniques for overcoming these barriers in this session from the Patient and Family Conference.
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In January 2025, life felt full of momentum. My husband and I had just moved from Colorado to Tennessee to be closer to family. I was beginning my real estate career, we had just bought our first house, and we had our two precious daughters, just 2 years and 10 months old.I was working hard to get back in shape postpartum, but something felt off. I was getting weaker, more out of breath when I…
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In this webinar, Dr. Rory Shallis discusses research most relevant to patients reported over the past year on the biology and treatment on Higher Risk MDS These studies were presented at the American Society of Hematology (ASH) 2025 meeting and their findings will be explained along with the potential impact of this research on understanding and treating Higher Risk MDS. This is an advanced…
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In this webinar, Dr. Akriti Jain discusses research most relevant to patients reported over the past year on the biology and treatment on Lower Risk MDS. These studies were presented at the American Society of Hematology (ASH) 2025 meeting and their findings will be explained along with the potential impact of this research on understanding and treating Lower Risk MDS. This is an advanced…
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Aplastic anemia
Aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
is a rare disease in which the
bone marrow
bone…
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Valeria Santini is an Associate Professor of Hematology at the University of Florence Medical School in Florence Italy, where she received her degree in Medicine and Postgraduate diploma in hematology (cum laude). She worked as an EORTC fellow in experimental hematology from 1988 to 1991 at the Dr. den Hoed Kliniek, Erasmus University, Rotterdam. In 1999 she worked in the Department of Leukemia…
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MDS, or
Myelodysplastic syndromes
Myelodysplastic syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell count for at…
, are a family of rare…
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PNH, or
Paroxysmal nocturnal hemoglobinuria
Paroxysmal nocturnal hemoglobinuria:
(par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A…
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In November 2016, at just 36 years old, Greg was diagnosed with severe
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count…
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Connecting with other patients and families can be a powerful and uplifting experience. Our networks let you learn from others, share your journey, get and give support and make new friends. You have the option of connecting on a one-to-one basis or with a group. You also choose the way you prefer to interact - by phone, in person or online.Speak with…
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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 months. You will use the Folia Health mobile app to enroll, consent, and complete all study activities. …
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This publication offers summaries of selected abstracts presented at the December 2021 Meeting of the American Hematology Society. It provides new and updated information about new research into the diagnosis, treatment and prognosis of
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these…
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MDS and AML Research Summaries for Patients from the 2021 European Hematology association and the American Society of Clinical Oncology Annual Meetings
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MDS and AML Research Summaries for Patients from the 2020 European Hematology association and the American Society of Clinical Oncology Meetings
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Research Summaries for Patients from the 2019 European Hematology Association and the 2019 American Society of Clinical Oncology meetings
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