AAMDSIF patient guides are complete resources, written and reviewed by recognized medical professionals who are experts in bone marrow failure disease.
Emergency Health Information Card
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.
Your Guide to Understanding AML (Acute Myeloid Leukemia)
This patient guide on AML begins with blood basics, AML diagnosis, and then specifics on symptoms, tests, actively managing your AML-related healthcare, and treatment options.
*Disclaimer: New treatments may have been approved since the booklets below were published. It is important to speak with a healthcare provider for up-to-date treatment options.
| File | Size |
|---|---|
 Patient Guide - AML (English) (2018) PDF | 1.65 MB |
| Patient Guide - AML (Spanish) (2016) PDF | 1.8 MB |
| Patient Guide - AML (Italian) (2019) PDF | 2.92 MB |
Your Guide to Understanding Aplastic Anemia
This essential primer for patients and families on aplastic anemia covers causes, symptoms, classifications, treatments, and much more. With easy-to-read text and charts, and section review content, newly diagnosed patients and any needing to know more about aplastic anemia should request this free AAMDSIF patient guide.
*Disclaimer: New treatments may have been approved since the booklets below were published. It is important to speak with a healthcare provider for up-to-date treatment options.
Your Guide to Understanding MDS (Myelodysplastic Syndromes)
This patient guide on myelodysplastic syndromes (MDS) begins with blood basics, MDS classifications, and then specifics on symptoms, tests, actively managing your MDS-related healthcare, and treatment options. As a highly variable disease, learn about all types of MDS with Your Guide to Understanding MDS.
*Disclaimer: New treatments may have been approved since the booklets below were published. It is important to speak with a healthcare provider for up-to-date treatment options.
Your Guide to Understanding PNH (Paroxysmal Nocturnal Hemoglobinuria)
Get the facts and information you need on paroxysmal nocturnal hemoglobinuria (PNH) in this patient guide. Learn about the several types of PNH blood cells, treatments, how to take an active role in your care, and tips for living well with PNH.
*Disclaimer: New treatments may have been approved since the booklets were published. It is important to speak with a healthcare provider for up-to-date treatment options.
Important Patient Information and Fact Sheets
Our Fact Sheets are one or two page sources of information on diverse subjects related to bone marrow failure disease as well as other important topics like transplants.
Research Summaries for Patients
AAMDSIF Research Summaries are clearly written summaries of the most recent research on rare blood cancers and bone marrow failure diseases presented at the most prestigious and important international scientific gatherings.
MDS Toolkit - Patient Information
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.
| File | Size |
|---|---|
| What is MDS | 559.16 KB |
| Knowing Your MDS Risk Level | 290.53 KB |
| Understanding the Symptoms of MDS | 306.24 KB |
| Treatment for Lower Risk MDS | 200.72 KB |
| Treatment for Higher Risk MDS | 230.82 KB |
| Managing Side Effects of MDS Therapy | 371.04 KB |
| Preparing for Medical Visits (2024) | 131.73 KB |
| Staying on Therapy | 335.36 KB |
MDS Toolkit - Disease Management Tools
Forms you can use to keep track of your treatment information and medical care. To learn more, see our MDS Toolkit page.
| File | Size |
|---|---|
| Appointment Tracker | 288.01 KB |
| Symptom Tracker | 331.43 KB |
| My Health Care Team | 331.08 KB |
| Blood Transfusion Record | 333.2 KB |
| Platelet Transfusion Record | 333.49 KB |
Aplastic Anemia Toolkit - Patient Information
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.
| File | Size |
|---|---|
| What is Aplastic Anemia? | 213.26 KB |
| Understanding Aplastic Anemia and Overlapping Diseases | 268.6 KB |
| Know the Types of Aplastic Anemia | 192.86 KB |
| Understanding the Symptoms of Aplastic Anemia | 120.54 KB |
| Treatment Options for Aplastic Anemia | 315.11 KB |
| Managing Side Effects of Treatment | 219.69 KB |
| Explore Clinical Trials | 129.96 KB |
| Preparing for Medical Visits | 294.92 KB |
Aplastic Anemia Toolkit - Disease Management Tools
Forms you can use to keep track of your treatment information and medical care. To learn more, see our Aplastic Anemia Toolkit page.
| File | Size |
|---|---|
| Appointment Tracker | 163.05 KB |
| Blood Transfusion Record | 184.62 KB |
| Healthcare Team Tracker | 157.51 KB |
| Platelet Transfusion Record | 184.08 KB |
| Symptom Tracker | 196.06 KB |
PNH Toolkit - Patient Information
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.
| File | Size |
|---|---|
| What is PNH? | 181.79 KB |
| Understanding the Symptoms of PNH | 221.76 KB |
| Understanding PNH Treatment Options (2024) | 174.49 KB |
| Explore Clinical Trials | 112.33 KB |
| Special Precautions for PNH | 103.15 KB |
| Managing Side Effects of Treatment | 220.32 KB |
| Preparing for Medical Visits | 293.55 KB |
PNH Toolkit - Disease Management Tools
Forms you can use to keep track of your treatment information and medical care. To learn more, see our PNH Toolkit page.
| File | Size |
|---|---|
| Appointment Tracker | 163.09 KB |
| Healthcare Team Tracker | 157.05 KB |
| Platelet Transfusion Record | 195.24 KB |
| Symptom Tracker | 135.24 KB |
| Blood Transfusion Record | 196.36 KB |