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In this webinar, Dr. Lourdes Mendez discusses research most relevant to patients reported over the past year on the biology and treatment on MDS and secondary AML. These studies were presented at the American Society of Hematology (ASH) 2022 meeting. Research findings are explained along with the potential impact of this research on understanding and treating MDS and AML. This is an…
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Dr. Caroline Piatek defined PNH, how PNH is diagnosed, the available treatment options, and side effect management. She also answered questions about PNH (Paroxysmal Nocturnal
Hemoglobinuria
Hemoglobinuria:
(hee-muh-gloe-buh-NYOOR-ee-uh) The presence of hemoglobin in the urine.
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PNH patients discuss their PNH journey by sharing their stories and answering questions from other PNH patients.
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Sagar Patel, MD, Huntsman Cancer Institute, explains this post-transplant condition and its treatments. Watch to learn more about techniques used to prevent GVHD as well as short-term and long-term complications.
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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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In this webinar, Jennifer Lotter explains medical terms most commonly used with a diagnosis of
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…
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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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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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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 rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
disorders are challenging to understand and…
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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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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 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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