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Chart to record medical professionals, pharmacy contacts, patient support organizations and others involved with your health care.
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Form to keep track of
platelet
platelet:
The smallest type of blood cell. Platelets help the blood to clot and stop bleeding. Also called a thrombocyte.
transfusions as part of MDS treatment
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Learn more about how to find a
clinical trial
clinical trial:
A type of research study that tests how a drug, medical device, or treatment approach works in people. There are several types of clinical trials. Treatment trials test new treatment options. Diagnostic trials test new ways to diagnose a disease. Screening trials test the best way to detect a…
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Form to keep track of
platelet
platelet:
The smallest type of blood cell. Platelets help the blood to clot and stop bleeding. Also called a thrombocyte.
transfusions as part 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…
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Form to record symptoms or reactions to treatment and medications that can be shared with health care providers
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Not all healthcare professionals or emergency responders will understand your rare diagnosis and unique needs. AAMDSIF has created an emergency health information card that communicates to others what they need to know about you to help you during a medical emergency.
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Descriptions of the criteria to determine severity 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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As you search online, you will find websites from many different sources. These seven questions will help you analyze and evaluate the credibility of each site you review. Many of these details can also be found in a website's "About Us" or "Contact Us" section.
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This publication offers summaries of selected abstracts presented at the 2021 Meetings of the European Hematology Association (EHA) and the American Society of Clinical Oncology (ASCO). It provides new and updated information about new research into the diagnosis, treatment and prognosis of
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in…
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What is EMPAVELI®? EMPAVELI® (previously known as
pegcetacoplan
pegcetacoplan:
EMPAVELI® is the first PNH treatment that binds to complement protein C3. It was approved by the Food and Drug Administration in May 2021 for treating adult patients with paroxysmal nocturnal hemoglobinuria (PNH). EMPAVELI is given skin (subcutaneously) by using the Empaveli injector or with an…
) is the…
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Chronic lymphocytic leukemia (CLL)
Chronic lymphocytic leukemia (CLL):
(CRAW-nik lim-foe-SIGH-tick loo-KEE-mee-uh) Chronic lymphocytic leukemia is a type of blood, lymph node and bone marrow cancer in which too many abnormal white blood cells called lymphocytes accumulate in your body.
is a type of cancer that involves certain white blood cells (lymphocytes) that develop in the
bone…
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Would you like to connect with other patients and families in your own town? Learn how you can participate in our volunteer-led Community Connections-local groups designed to inspire the creation of community organizations for the purpose of connecting and supporting patients and families, as well as raising awareness and funds for AAMDSIF programs.
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Form to keep track of
blood transfusions
blood transfusions:
A blood transfusion is a safe and common procedure. Most people who have a bone marrow failure disease like aplastic anemia, MDS or PNH will receive at least one blood transfusion. When you receive a blood transfusion, parts of blood from a donor are put into your bloodstream. This can help some…
as part of PNH treatment
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Form to keep track of
blood transfusions
blood transfusions:
A blood transfusion is a safe and common procedure. Most people who have a bone marrow failure disease like aplastic anemia, MDS or PNH will receive at least one blood transfusion. When you receive a blood transfusion, parts of blood from a donor are put into your bloodstream. This can help some…
as part of
aplastic anemia…
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A patient's guide to understanding blood and
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
. Blood is a "circulating organ" of the body. It is composed of many different types of cells that are carried through the body in
plasma
plasma:
The fluid part of the blood. Plasma is mostly made of water with…
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This essential primer for patients and families 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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Summary of FDA-approved medicines for treating
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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Learn more about the connection between
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 other…
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This publication offers summaries of selected abstracts presented at the Annual Meeting of the American Hematology Society held in December 2022. It provides new and updated information about 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…
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This publication offers summaries of selected abstracts presented at the Annual
Meeting of the American Hematology Society held in December 2022. It provides new and
updated information about research into the diagnosis, treatment and prognosis of bone
marrow failure diseases with a deep focus o n
Myelodysplastic Syndromes
Myelodysplastic Syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez…
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