A diagnosis of rare bone marrow failure disease can confuse and overwhelm patients and their loved ones. There is much to learn, and this website provides the information you need to know. We have assembled the latest and most accurate information available on bone marrow failure disease. And since people learn in different ways, we present a variety of learning experiences, including a range of online resources with disease-specific features, interactive learning programs, educational videos, print booklets and newsletters and live regional patient and family conferences.
Learning is a process, so don’t feel pressured to learn everything at once. There’s a lot to digest, so be gentle with yourself as you read through our materials. Take notes as you go along and ask your doctor to clarify any questions you have based on what you’ve read.
Don't Believe Everything You Read
Worried patients, especially the newly diagnosed, may be inclined to accept everything they read, even if what they’re reading doesn’t necessarily apply to them. You need to know that some public information may be outdated, misleading or just plain wrong. Learn more about how to evaluate health information and better understand how to find trustworthy and accurate information.
Learn from Others
It’s completely normal to be scared by your diagnosis. But keep in mind that there is now more information, more research and more treatment options available for bone marrow disease than ever before. Like the patients before you, you can develop strategies for coping, learning and managing medical information. Here are some ways to find the support and connection that will help:
- Consider talking with a Peer Support volunteer. These are patients who have lived with bone marrow failure, gone through treatments and coped with the emotional challenges of a life-threatening disease.
- Join a support group. We have Community of Hope support groups around the country.
- Participate in online groups and forums. Start with www.marrowforums.org, a supportive group where you can learn, get feedback and share concerns with patients like you.
- Attend one of our Patient and Family Conferences