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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. 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 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. 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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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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During this webinar, Dr. Sumithira Vasu will discuss the diagnosis, treatment, and impact of transplant-associated thrombotic microangiopathy (TA-TMA). After the presentation, there will be a question-and-answer session. Questions can be submitted in advance to help@aamds.org.
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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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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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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, 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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The primary goal of this RENEW study is to find out how well elritercept works in lowering the need for
red blood cell
red blood cell:
The most numerous type of blood cell in healthy people. Red blood cells contain hemoglobin, a protein that picks up oxygen in the lungs and brings it to cells in all parts of the body. Also called erythrocyte, RBC.
(RBC) transfusions. Other aims…
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PLEDGE – Patients’ Long-term Experience on VOYDEYA (Danicopan): Gathering Evidence in the Real-World
The IRB-approved observational Phase IV PLEDGE study is set-up to collect real-world data on adult patients with
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.…
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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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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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In this webinar, Dr. Akriti Jain discusses research most relevant to patients reported over the past year on the biology and treatment of 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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AAMDSIF receives support from corporate partners who invest in advancing our mission. Thanks to their financial contributions, we are able to provide answers, support, and hope to patients, their families, and healthcare professionals entrusted with providing quality care.
AAMDSIF Corporate Partners provide financial and in-kind support of programming through sponsorships and grants.…
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