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Dr. Jennifer Kim explains how patients with
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……
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Dr. Anju Goyal explains
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…
and answers questions from the…
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Dr. Marcin Wlodarski explains diagnosis and treatment for pediatric patients with 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…
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Dr. Satheesh Chonat explains the presentation of 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.…
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What do you go through to treat 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 when red blood cell count is low. Most…
? What is life like…
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Allen had a gratifying life. He had a wife and a two-year-old, living on a farm, working in the Post-Anesthesia Care Unit at the teaching hospital. He exercised, ran, hiked, hunted, fished, and more, enjoying the outdoors, his family, and his career.
In January, he had the worst case of the flu he had ever experienced. The 104-degree fevers lasted several days. He…
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My life before I was diagnosed with
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…
was pretty busy! I…
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In this recording, Dr. Jesus Gonazlez Lugo discusses the diagnosis of High Risk MDS and the evolution to AML along with treatment options for patients. Recording includes the question-and-answer session.
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In this recording, Dr. Taha Bat discusses the 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 when red blood cell count is low. Most…
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In this webinar, Dr. David Sallman discusses the diagnosis of MDS and MPN, treatment options available to patients and symptom management.
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Oppose 57% Cut to Congressionally Directed Medical Research Programs
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Oppose 57% Cut to Congressionally Directed Medical Research Programs
Tell your Members of Congress to Vote NO on The Full-Year Continuing Appropriations and Extensions Act, 2025
As early as this Tuesday, the House will be voting on a continuing resolution to fund government programs…
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Judy talks about her PNH journey from diagnosis, treatment decisions and moving forward.
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In this recording, Dr. Srinivasa Sanikommu discusses current thinking on PNH and therapies that are available to patients. Recording includes the question-and-answer session.
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In this recording, Dr. Srinivasa Sanikommu discusses PNH complications that can impact a patient - extravascular
hemolysis
hemolysis:
(hi-MOL-uh-suss) The destruction of red blood cells.
, intravascular hemolysis,
Budd-Chiari Syndrome
Budd-Chiari Syndrome:
(bud-kee-AR-ee SIN-drome) A blood clot in the major vein that leaves the liver (hepatic vein). The liver and the spleen…
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In this recording, Dr. Anurag Singh discusses transplant and potentials complications such as GVHD and treatment options. Recording includes the question-and-answer session.
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In this recording, Dr. Furha Cossor discusses living with
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…
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In this webinar, Drs. Fadi Haddad and Jayastu Senapati discuss the diagnosis secondary AML from MDS, treatment options available to patients and symptom management.
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AAMDSIF advocates for and invests in collaborative research to accelerate the discovery of better treatments and cures for bone marrow failure disorders.
AAMDSIF Research Grants
Since 1989, AAMDSIF has supported innovative research into the causes of
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough…
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Because patients need help in different ways, we offer a variety of support services. From the patient/family HelpLine and support networks to live conferences, online classes and volunteer events, our aim is to positively impact as many lives as we can. Our community members contribute to that goal by sharing their own inspirational Stories of Hope, supporting each other's need to stay…
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Watch
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…
experts at the 2025 AAMDSIF
Bone Marrow Failure…
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