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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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Learn how to build a strong healthcare team
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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 can be…
Disease Research Summaries for Patients from the…
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Guidelines for managing your MDS treatment plan with your health care team
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Summary of FDA-approved medicines for treating high risk MDS and transplantation options
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ULTOMIRIS® 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…
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This guide provides information about
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…
and gives you some things…
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Explanation of how and why your MDS risk level determines your treatment options
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TIBSOVO is a prescribed medication approved to treat adult patients with myelodysplastic
syndromes (MDS) with an isocitrate dehydrogenase-1 (IDH1)
mutation
mutation:
Any change or alteration in a gene. A mutation may cause disease or may be a normal variation. Paroxysmal nocturnal hemoglobinuria (PNH) occurs because of a mutation in the PIG-A gene of a single stem cell in the bone…
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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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