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Suneet Agarwal, MD, PhD from Boston's Children's Hospital provides essential information for families about inherited
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…
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In this webinar, Dr. Gail Roboz discusses the Molecular
International Prognostic Scoring System
International Prognostic Scoring System:
A system that turns patient data into a score. The score tells how quickly a myelodysplastic syndrome (MDS) case is progressing and helps predict what may happen with the patient's MDS in the future. Also called IPSS.
(IPSS-M) which is a newly…
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Dr. Salman Fazal will gives a brief AML overview and then answers questions from participants. The question and answer session is recorded here.
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Watch this session to learn techniques for coping after the diagnosis of a
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…
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This session explains why and how patients may be offered a transplant to treat 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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Learn how to manage your 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…
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From the 2023 Omaha Patient and Family Hybrid Conference: PNH Non-Transplant Therapies with Dr. Alex Nester. Learn symptom management and options for therapies in this session which includes questions from the audience.
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Dr. Vijaya Bhatt discusses Low-Risk MDS in accessible terminology during this session from the 2023 Omaha, NE, Patient and Family Hybrid Conference.
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High Risk MDS Non-Transplant Therapies Current Therapies and
Clinical Trials
Clinical Trials:
Clinical research is at the heart of all medical advances, identifying new ways to prevent, detect or treat disease. If you have a bone marrow failure disease, you may want to consider taking part in a clinical trial, also called a research study.
Understanding Clinical Trials
Clinical……
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Watch this session, featuring Dr. Srinivas Tantravahi, to learn more about different treatment options for patients 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…
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Ask the Pediatric Experts: Session from the Patient and Family Conference in Salt Lake City, UT 2023
Suneet Agarwal, MD, PhD, from Boston Children's Hospital answered parents' questions in this session from the Patient and Family Conference in Salt Lake City, Utah. Find the answers to your most pressing question in this recording.
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In this webinar, Jennie Vagher, certified genetic counselor, discusses hereditary or genetic predisposition to MDS. Jennie is an expert in rare cancer predisposition syndromes.
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In this webinar, Dr. Thota will discuss what caregivers can expect when their loved one is diagnosed- symptoms and side effects of disease and treatments.
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Dr. Lai discusses the latest research presented at the 2023 EHA and ASCO meetings. This is an advanced educational presentation.
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Learn about
biosimilars
biosimilars:
What is a Biosimilar?
A biosimilar is a type of biologic medication. The term “biosimilar” means that the medication is highly similar to the already approved brand name biologic (“originator” medication). Biosimilars are not generic versions of the original biologic.
Difference Between…
, biosimilar medications, and their use for
bone marrow…
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Learn about treatments that may be recommended for the treatment 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…
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Michael Pulsipher, MD, Primary Children's Hospital, explains the details of
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. But for many…
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The panelists are individuals who are living 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 development. People with MDS have low…
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Dr. Taha Bat explains extravascular
hemolysis
hemolysis:
(hi-MOL-uh-suss) The destruction of red blood cells.
, focusing on PNH (Paroxysmal Nocturnal
Hemoglobinuria
Hemoglobinuria:
(hee-muh-gloe-buh-NYOOR-ee-uh) The presence of hemoglobin in the urine.
). This session is important for anyone affected by PNH.
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