Please make a donation to the Aplastic Anemia and MDS International Foundation.
Donate Today
AAMDSIF educational materials are comprehensive, easy-to-understand resources written and reviewed by medical professionals who are experts in bone marrow failure diseases.
Not all healthcare professionals or emergency responders will understand your rare diagnosis and unique needs. The emergency health information card communicates to others what they need to know about you to help you during a medical emergency.
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…
AAMDSIF patient guides are complete resources, written and reviewed by recognized medical professionals who are experts in 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.
A patient's guide to understanding blood and 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. The blood helps to…
Our Fact Sheets are one or two page sources of information on diverse subjects related to 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 as well as other important topics like transplants.
Chronic lymphocytic leukemia (CLL) is a type of cancer that involves certain white blood cells (lymphocytes) that develop in the bone marrow and lymph nodes. These cancer cells then move into the bloodstream. CLL is one…
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…
A list of organizations & programs that may provide financial resources & other assistance
A bone marrow failure diagnosis of aplastic anemia, MDS and PNH is complicated, and the treatment options require oversight by a well-trained and experienced expert. But, finding an expert can be challenging. AAMDS has…
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…
Information about iron levels and the ways they fluctuate during treatment, alongside information about the effects of such fluctuations
Information on workplace rights & responsibilities for individuals with Paroxysmal Nocturnal Hemoglobinuria (PNH)
MarrowForums provides free discussion forums for patients with bone marrow failure diseases
Supporting students with Bone Marrow Failure Diseases, a guide for parents and school personnel
This guide provides important information about bone marrow and stem cell transplantation
This guide provides information about clinical trials and gives you some things to consider when deciding whether to take part
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)
Pure red cell aplasia (PRCA) is a condition in which the bone marrow stops producing red blood cells that are responsible for carrying oxygen
Our Fact Sheets are one or two page sources of information on diverse subjects related to 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 as well as other important topics like transplants.
What is EMPAVELI®? EMPAVELI® (previously known as pegcetacoplan) is the first PNH treatment that binds to complement protein C3. It is approved by the Food and Drug Administration for adult patients with paroxysmal…
FABHALTA, a complement factor B inhibitor, is the first oral medication approved to treat adults with paroxysmal nocturnal hemoglobinuria (PNH)
INQOVI® (previously known as ASTX727) is a prescribed oral tablet combination of decitabine and cedazuridine approved by the Food and Drug Administration for adult patients with myelodysplastic syndromes (MDS) and…
REBLOZYL® (luspatercept-aamt) was the first erythroid maturation agent (EMA) approved in 2020 by the Food and Drug Administration for the treatment of anemia in adult patients with myelodysplastic syndromes (MDS) who…
RYTELO (imetelstat) is an oligonucleotide telomerase inhibitor used to treat adults with IPSS-R low to intermediate-1 myelodysplastic syndromes (MDS) with transfusion dependent anemia requiring four or more red blood…
SOLIRIS is a prescription medicine called a monoclonal antibody. SOLIRIS is used to treat adults with a disease called Paroxysmal Nocturnal Hemoglobinuria (PNH)
TIBSOVO is a prescribed medication approved to treat adult patients with myelodysplastic syndromes (MDS) with an isocitrate dehydrogenase-1 (IDH1) mutation either when the disease has relapsed or has not improved after…
ULTOMIRIS® is a prescription medicine called a monoclonal antibody. ULTOMIRIS® is used to treat adults and children 1 month of age and older with a disease called Paroxysmal Nocturnal Hemoglobinuria (PNH)
Venclexta® (also known as Venetoclax) is a prescribed oral tablet approved by the Food and Drug Administration for adult patients with acute myeloid leukemia (AML)
VOYDEYA is a prescription medicine used along with ravulizumab or eculizumab to treat breakdown of red blood cells that takes place outside of blood vessels (extravascular hemolysis), in adults with paroxysmal nocturnal…
AAMDSIF Research Summaries are clearly written summaries of the most recent research on rare blood cancers and 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… diseases presented at the most prestigious and important international scientific gatherings.
This publication offers summaries of selected abstracts presented at the Annual Meeting of the American Hematology Society held in December 2024. It provides new and updated information about research into the diagnosis…
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…
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…
MDS and AML Research Summaries for Patients from the 2021 European Hematology association and the American Society of Clinical Oncology Annual Meetings
This publication offers summaries of selected abstracts presented at the December 2021 Meeting of the American Hematology Society. It provides new and updated information about new research into the diagnosis, treatment…
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…
Summary for patients from the seventh International Bone Marrow Failure Disease Scientific Symposium
MDS and AML Research Summaries for Patients from the 2020 European Hematology association and the American Society of Clinical Oncology Meetings
Bone Marrow Failure Disease Research Summaries for Patients from the 2020 American Hematology Society Annual Meeting
MDS and AML Research Summaries for Patients from the 2019 American Society of Hematology Annual Meeting
Research Summaries for Patients from the 2019 European Hematology Association and the 2019 American Society of Clinical Oncology meetings
MDS and AML Research Summaries for Patience from the 2018 American Society of Hematology Annual Meeting
Aplastic Anemia and PNH Research Summaries for Patients from the 2018 American Society of Hematology Annual Meeting
Downloadable pages about disease basics, Aplastic Anemia risk level, treatment options, side effect management and communicating with your health care team. To learn more, see our Aplastic Anemia Toolkit page.
Basic description of aplastic Anemia and how it affects your bone marrow and blood.
Learn more about the connection between aplastic anemia and other bone marrow failure diseases.
Descriptions of the criteria to determine severity of aplastic anemia.
Review of the range of aplastic anemia symptoms based on low blood counts.
Summary of FDA-approved medicines for treating aplastic anemia and transplantation options.
Summary of the common side effects of aplastic anemia treatments and tips for managing them.
Learn more about how to find a clinical trial.
Guidelines and suggested questions for making the most of your health care appointments.
Use the AAMDS Map of Specialists to find an Aplastic Anemia expert.
Forms you can use to keep track of your treatment information and medical care. To learn more, see our Aplastic Anemia Toolkit page.
Form to record health care visits and notes.
Form to keep track of blood transfusions as part of aplastic anemia treatment.
Chart to record medical professionals, pharmacy contacts, patient support organizations and others involved with your health care.
Form to keep track of platelet transfusions as part of aplastic anemia treatment.
Form to record symptoms or reactions to treatment and medications that can be shared with health care providers
Downloadable pages about disease basics, MDS risk level, treatment options, side effect management and communicating with your health care team. To learn more, see our MDS Toolkit page.
Basic description of MDS and how it affects your bone marrow and blood
Explanation of how and why your MDS risk level determines your treatment options
Review of the range of MDS symptoms based on low blood counts
Summary of active surveillance and supportive care MDS treatment options
Summary of FDA-approved medicines for treating high risk MDS and transplantation options
Summary of the common side effects of MDS treatments and tips for managing them
Guidelines and suggested questions for making the most of your health care appointments
Guidelines for managing your MDS treatment plan with your health care team
Use the AAMDS Map of Specialists to find an MDS expert
Forms you can use to keep track of your treatment information and medical care. To learn more, see our MDS Toolkit page.
Form to keep track of blood transfusions as part of MDS treatment
Form to record health care visits and notes
Chart to record medical professionals, pharmacy contacts, patient support organizations and others involved with your health care
Form to keep track of platelet transfusions as part of MDS treatment
Form to record symptoms or reactions to treatment and medications that can be shared with health care providers
Downloadable pages about disease basics, PNH risk level, treatment options, side effect management and communicating with your health care team. To learn more, see our PNH Toolkit page.
Basic description of PNH and how it affects your bone marrow and blood
Review of the range of PNH symptoms based on low blood counts
Summary of FDA-approved medicines for treating PNH and transplantation options.
Learn more about how to find a clinical trial
PNH patients need to take a few special precautions
Summary of the common side effects of PNH treatments and tips for managing them
Guidelines and suggested questions for making the most of your health care appointments
Use the AAMDS Map of Specialists to find a PNH expert
Tips for improving medication adherence
Learn how to build a strong healthcare team
Forms you can use to keep track of your treatment information and medical care. To learn more, see our PNH Toolkit page.
Form to record health care visits and notes
Chart to record medical professionals, pharmacy contacts, patient support organizations and others involved with your health care
Form to keep track of platelet transfusions as part of PNH treatment
Form to record symptoms or reactions to treatment and medications that can be shared with health care providers
Form to keep track of blood transfusions as part of PNH treatment
