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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. 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 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 webinar, Dr. David Sallman discusses the diagnosis of MDS and MPN, treatment options available to patients and symptom management.
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11th AAMDSIF and Fred Hutch Cancer Center Conference 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 a condition that happens when red blood cell count is low. Most…
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During this webinar, Dr. Joseph Pidala will discuss how patients and the medical team work together to make transplant decisions. After the presentation, there will be a panel Q & A session. Questions can be submitted in advance to help@aamds.org.
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In this webinar, Catherine Bryne and Kathryn Herricks will discuss the treatment and management 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…
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In this webinar, Dr. Jayastu Senapati discusses the diagnosis of secondary AML from MDS, treatment options available to patients and symptom management. Questions were asked by the online audience, and Dr. Senapati answered them clearly.
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ASH (American Society for Hematology) recently released new clinical practice guidelines for the diagnosis and management 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…
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In 2009, Daniel had a good job in accounting in Sydney, Australia. He had a structured, organized, healthy lifestyle. He had a devoted partner (whom he later married) and was studying for the Chartered Accountancy qualification. He rode his bike to work and played soccer. He was planning a good life ahead.One day at the office, the receptionist pinched his arm. The next day, he saw a huge welt in…
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The 2025 Patient and Family Conference in Rockville, MD was held on March 8, 2025.Below are links to conference session recordings in full.
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In this recording, Dr. Catherine Lai discusses MDS and how patients can also be diagnosed with MPN's. Her presentation discusses the treatment options available to patients and resources.
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Debra shares both her experiences and how she maintained hope 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…
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In this recording, Dr. Ball Brian discusses low risk MDS and current treatment options.
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In this recording, Dr. Bhumika Patel discusses what is new in PNH and current treatment options available to patients.
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In this recording, Dr. Parveen Shiraz discusses transplant for MDS and potentials complications such as GVHD and treatment options.
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In this recording, Dr. Phillip Scheinberg discusses
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…
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In this recording, Dr. Philip Scheinberg 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 may…
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In this webinar, Dr. Amy DeZern discusses the latest in transplantation and GVHD for
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…
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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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