Aplastic Anemia Connection - Learning About Aplastic Anemia | Aplastic Anemia and MDS International Foundation

Aplastic Anemia Connection - Learning About Aplastic Anemia

Whether you are newly diagnosed or have been living with aplastic anemia for some time, AA&MDSIF knows how important it is to understand this rare bone marrow failure disease. We have a wide assortment of information for patients and families at any age, and any phase of living with aplastic anemia.  So whether you are new, just confused, or have long been living with aplastic anemia, check out our resources for answers, support and hope. 

Newly diagnosed or confused?

  • In order to understand bone marrow failure diseases like aplastic anemia, it's important to know certain facts about blood and bone marrow. Our Blood and Bone Marrow Basics Interactive Learning Module provides the information you need to know about the types of blood cells, what they are and how blood cells are made. It also discusses some basic blood and bone marrow tests.
  • Dr. David Margolis, Program Director of Children’s Hospital of Wisconsin’s Blood and Bone Marrow Transplant Program, helped AA&MDSIF explain the basics of  bone marrow failure, the treatments, side effects, and activity restrictions in The Bone Marrow Garden, an easy to understand video and slide presentation created especially for children.

Looking for more details?

  • Our website addresses the know causes, symptoms, diagnosis, and subtypes of aplastic anemia. You will also find explanations about the treatments available, including supportive care options, transplantation, and drug information. Special issues such as air travel and high altitudes, pregnancy and information about surgery for aplastic anemia patients is included.
  • Prefer a paper copy? Request some of our free educational materials.
  • The Aplastic Anemia & MDS International Foundation is Meeting You Where You Are in 2014 by offering six free regional conferences around the U.S.  Each program will provide you with answers from leading medical experts and the chance to connect with as many as 150 other patients and their caregivers. Find a conference near you!
  • Our Online Learning Center has recordings of leading aplastic anemia experts discussing many key issues related to aplastic anemia.

Challenged to keep track of symptoms, treatments and all those lab results?

  • Treatment for aplastic anemia and other bone marrow failure diseases can be long and improvements can be slow. AA&MDSIF is pleased to offer tools to help patients to monitor their progress, record their reaction to therapies, and even track their medication using our Treatment Tracker App for Smartphones and iPads, or the spreadsheet version.
  • Need more personal information? Call our patient educator who can help with medical information, advice, and referrals. Email or phone (800)747-2828 or(301) 279-7202 x140.

Want to connect to other patients and families?

  • Because aplastic anemia is so rare, it is often difficult to get in touch with others who are dealing with issues similar to your own. We can help by putting you in touch with other patients and families through the AA&MDSIF Support Connection.
  • Communities of Hope – are volunteer led local support groups built to create an ongoing, local organization supporting patients and families, and raise awareness and support for AA&MDSIF programs that support them.