Start Your Self-Advocacy Journey

Standing Up For Your Health depends on you being your own best advocate and healthcare champion. The Aplastic Anemia & MDS International Foundation is your partner in helping you build the skills you need to succeed!

Whether you are newly diagnosed, or have been living with aplastic anemia, MDS, or PNH for many years, Standing Up For Your Health will provide you with practical strategies that you can readily apply now!

The skills necessary to be a strong self-advocate are easy to learn and to do. In fact, you are probably doing some of them right now. The challenge is that they are also rather easy NOT to do, especially when you are fatigued and overwhelmed by new medical terms, a new diagnosis, and the emotional ups and downs that come with managing a serious and life-threatening illness.

Here is how to begin your Standing Up For Your Health journey:

  • Complete the Self-Advocacy Skills Checklist. Find out where you are already a strong advocate, and where you may need some improvement.
  • Review the Five Pillars of Standing Up for Your Health. Decide on the one area that you think is most important for you. Make a checklist of what steps are needed to be as prepared as you can be in that area, and work on each step.
  • View the self-advocacy video presentations provided through our Online Learning Center.  Hear our Patient Educator discuss how you can be your own best advocate!
  • Check out the many links and resources provided throughout the Standing Up For Your Health Web pages, in addition to our online Self-Advocacy Resources. We have gathered the best information on topics like finding an expert, talking with your doctor, creating a personal health record, and much more.
  • Share what you learn with family and friends. As you teach them about what it takes to stand up for your health, you will become better at it yourself.
  • Learn from others. Read these role model stories as you craft your own plan to become an effective self-advocate.
  • Share your stories of success. We want to know how you are using what you learn here. Tell is what you have done to get your best care and treatment and become a powerful patient. Tell us your self-advocacy success story now!
  • If you prefer to have this information in an easy to read print format, consider ordering a copy of Standing up for Your Health: Self Advocacy for Patients with Bone Marrow Failure Diseases. This booklet reviews the five pillars of self-advocacy provided on this Web site, presenting you with a clear, step-by-step process for becoming a strong self-advocate. It also provides tips, resources and activities. Order a print copy now or you can download a PDF file and print your own.

Learn About the Five Pillars of Standing Up for Your Health »