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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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Summary of FDA-approved medicines for treating PNH and transplantation options.
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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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Form to record health care visits and notes.
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Use the AAMDS Map of Specialists to find an MDS expert
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Research Summaries for Patients from the 2019 European Hematology Association and the 2019 American Society of Clinical Oncology meetings
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MDS and AML Research Summaries for Patients from the 2021 European Hematology association and the American Society of Clinical Oncology Annual Meetings
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PNH patients need to take a few special precautions
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VOYDEYA is a prescription medicine used along with ravulizumab or
eculizumab
eculizumab:
Eculizumab (Soliris ®) is given as an IV into a vein at the doctor’s office or at a special center. The procedure usually takes about 35 minutes. You will probably get an IV once a week for the first 4 weeks. Starting in the 5th week, you will get a slightly higher dose of Soliris every 2 weeks…
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This guide provides important information about
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
and stem cell transplantation
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Basic description of PNH and how it affects your
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
and blood
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RYTELO (imetelstat) is an oligonucleotide telomerase inhibitor used to treat adults with IPSS-R low to intermediate-1
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…
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Pure red cell aplasia (PRCA)
Pure red cell aplasia (PRCA):
A condition that occurs when the bone marrow stem cells do not make red blood cells. Red blood cell counts are low. White blood cell and platelet counts are normal.
is a condition in which the
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
stops…
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Form to record health care visits and notes
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SOLIRIS is a prescription medicine called a
monoclonal antibody
monoclonal antibody:
A type of protein called an antibody that is engineered to look for a specific substance in the body. There are many kinds of monocloncal antibodies. Each one looks for only one substance. Eculizumab (Soliris) is an monoclonal antibody that may be prescribed to treat patients with paroxysmal…
. SOLIRIS…
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Information on workplace rights & responsibilities for individuals 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. Hemoglobinuria means hemoglobin in…
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Review of the range of PNH symptoms based on low blood counts
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Summary of active surveillance and
supportive care
supportive care:
Care given to improve the quality of life, or comfort, of a person with a chronic illness. Supportive care treats the symptoms rather than the underlying cause of a disease. The goal is to help the patient feel better. Patients with low blood counts may be given blood transfusions as supportive…
MDS treatment options
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Venclexta® (also known as
Venetoclax
Venetoclax:
Venetoclax is used to treat chronic lymphocytic leukemia or small lymphocytic leukemia in adults. Venetoclax is used alone or in combination with other cancer medicines to treat these conditions.
) is a prescribed oral tablet approved by the Food and
Drug Administration for adult patients with
acute myeloid leukemia
acute myeloid…
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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)
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