Patient Guides and Fact Sheets | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

Patient Guides and Fact Sheets

  1. Home
  2. Patients and Families
  3. Education
Introductory image: Manny with Girl at Conference

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.

FileSize
Emergency Health Information Card - Instructions362.02 KB
Emergency Health Information Card - Non Transplant Patient6.46 MB
Emergency Health Information Card - Transplant Patient228.26 KB

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.

FileSize
Patient Guide - AML (English) (2018) PDF1.65 MB
Patient Guide - AML (Spanish) (2016) PDF1.8 MB
Patient Guide - AML (Italian) (2019) PDF2.92 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. 

FileSize
Patient Guide - Aplastic Anemia (English) (2024) PDF2.67 MB
Patient Guide - Aplastic Anemia (French) (2016) PDF5.88 MB
Patient Guide - Aplastic Anemia (German) (2014) PDF9.87 MB
Patient Guide - Aplastic Anemia (Italian) (2014) PDF5.8 MB
Patient Guide - Aplastic Anemia (Spanish) (2017) PDF2.03 MB

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. 

FileSize
Patient Guide - MDS (English) (2024) PDF3.63 MB
Patient Guide - MDS (French) (2014) PDF9.4 MB
Patient Guide - MDS (German) (2014) PDF8.75 MB
Patient Guide - MDS (Portuguese) (2014) PDF7.77 MB
Patient Guide - MDS (Spanish) (2016) PDF3.28 MB
Patient Guide - MDS (Italian) (2019) PDF10.19 MB
NCCN Patient Guide - MDS (English) (2021) PDF2.03 MB

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.
 

FileSize
Patieint Guide - PNH (English) (2024) PDF2.63 MB
Patient Guide - PNH (French) (2014) PDF10.2 MB
Patient Guide - PNH (German) (2014) PDF13.4 MB
Patient Guide - PNH (Italian) (2014) PDF15.04 MB
Patient Guide - PNH (Portuguese) (2014) PDF9.59 MB
Patient Guide - PNH (Spanish) (2014) PDF14.94 MB

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. 

FileSize
Fact Sheet - CLL (2019) PDF1.72 MB
Fact Sheet - Community Connections (2019) PDF1019.32 KB
Fact Sheet - Evaluating the Quality of Online Health Information (2019) PDF1.56 MB
Fact Sheet - Financial Resources (2019) PDF3.19 MB
Fact Sheet - Iron Overload (2019) PDF2.07 MB
Fact Sheet - Marrow Forums (2019) PDF2.94 MB
Fact Sheet - PRCA (2019) PDF1.29 MB
Fact Sheet - Student Guide for Patients (2018) PDF3.76 MB
Fact Sheet - Blood and Bone Marrow Basics (December 2019) PDF5.45 MB
Understanding Bone Marrow and Stem Cell Transplantation (2018) PDF4.37 MB
Your Guide to Understanding Clinical Trials (2022)186.89 KB
COVID-19 Guidance for Patients May 2022178.36 KB
Living with PNH - Workplace Rights and Responsibilities1.16 MB
Biosimilar Fact Sheet113.76 KB
EMPAVELI Medication Fact Sheet115.83 KB
FABHALTA Medication Fact Sheet108.11 KB
INQOVI Fact Sheet147.29 KB
REBLOZYL Medication Fact Sheet (Luspatercept)122.55 KB
RYTELO Medication Fact Sheet (Imetelstat)122.77 KB
TIBSOVO Medication Fact Sheet97.16 KB
VENCLEXTA Medication Fact Sheet (Venetoclax)124.34 KB
VOYDEYA Medication Fact Sheet122.08 KB
SOLIRIS Medication Fact Sheet146.51 KB
ULTOMIRIS Medication Fact Sheet174.77 KB

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.

FileSize
Research Summary - ASH 2022 Aplastic Anemia and PNH - Booklet Final21.91 MB
Research Summary - ASH 2022 MDS and AML - Booklet16.42 MB
Research Summary - ASH 2021 MDS and AML - for Patients1.34 MB
Research Summary - EHA and ASCO 2021 - Aplastic Anemia and PNH for Patients603.24 KB
Research Summary - ASH2018 - Aplastic Anemia and PNH (2018) PDF4.47 MB
Research Summary - ASH2018 - MDS and AML (2018) PDF5.01 MB
Research Summary - ASH2019 - MDS and AML (2020) PDF616.81 KB
Research Summary - EHA ASCO 2019 PDF5.64 MB
Research Summary - AAMDS Scientific Symposium 20204.53 MB
Research Summary - EHA ASCO 2020 PDF704.58 KB
Research Summary - ASH 2020 MDS AML735.84 KB
Research Summary - EHA ASCO 2020 PDF669.29 KB

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.

FileSize
What is MDS559.16 KB
Knowing Your MDS Risk Level290.53 KB
Understanding the Symptoms of MDS306.24 KB
Treatment for Lower Risk MDS200.72 KB
Treatment for Higher Risk MDS230.82 KB
Managing Side Effects of MDS Therapy371.04 KB
Preparing for Medical Visits (2024)131.73 KB
Staying on Therapy335.36 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.

FileSize
Appointment Tracker288.01 KB
Symptom Tracker331.43 KB
My Health Care Team331.08 KB
Blood Transfusion Record333.2 KB
Platelet Transfusion Record333.49 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.

FileSize
What is Aplastic Anemia?213.26 KB
Understanding Aplastic Anemia and Overlapping Diseases268.6 KB
Know the Types of Aplastic Anemia192.86 KB
Understanding the Symptoms of Aplastic Anemia120.54 KB
Treatment Options for Aplastic Anemia82.87 KB
Managing Side Effects of Treatment219.69 KB
Explore Clinical Trials129.96 KB
Preparing for Medical Visits294.92 KB
Use the AAMDS Map of Specialists to Find an Aplastic Anemia Expert357.82 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.

FileSize
Appointment Tracker163.05 KB
Blood Transfusion Record184.62 KB
Healthcare Team Tracker157.51 KB
Platelet Transfusion Record184.08 KB
Symptom Tracker196.06 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.

FileSize
What is PNH?181.79 KB
Understanding the Symptoms of PNH221.76 KB
Understanding PNH Treatment Options59.23 KB
Explore Clinical Trials112.33 KB
Special Precautions for PNH103.15 KB
Managing Side Effects of Treatment220.32 KB
Preparing for Medical Visits293.55 KB
Use the AAMDS Map of Specialists to find a PNH Expert356.86 KB
Tips for Improving Medication Adherence58.97 KB
Be Your Best Advocate - Learn How to Build a Strong Healthcare Team81.23 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.

FileSize
Appointment Tracker163.09 KB
Healthcare Team Tracker157.05 KB
Platelet Transfusion Record195.24 KB
Symptom Tracker135.24 KB
Blood Transfusion Record196.36 KB

Learn More