Patients & Caregivers
Welcome, we are here to help!
Whether you are a patient, spouse, caregiver, family member or friend; newly diagnosed or have lived with a bone marrow failure disease for years, we have something for you. Three things, actually—Answers, Support and Hope.
From talking with and listening to patients and caregivers for nearly 30 years, we know that learning about diseases most people have never heard of can be confusing and complicated. We also know that not everyone learns new information in the same way. So, not only have we assembled the best, most accurate and up to date information, we present it in a variety of ways—printed materials, newsletters, web pages, videos, webinars and special interactive learning programs—so that you can learn everything you need and want to know about aplastic anemia, MDS or PNH.
For many, reading, seeing and learning the information is just the start, and you may have many more questions. You may be anxious, want to speak with someone who can answer those questions or talk with a person who has been through what you are living with.
- Do I have the right doctor?
- What can I expect with that treatment?
- How will this change my life?
- What have others done in this situation?
All of these questions and feelings are very normal and natural and that’s why we offer such a full range of services to help you. Look across the top and along both sides of this page to see the many resources that are available to you.
- Speak with a patient educator
- Connect with a Peer Support volunteer
- Learn about Standing Up For Your Health
- Join a Community of Hope
- Attend a Patient and Family conference
- Ask the Experts - Do you have a unanswered questions? Complete this short form and our patient educators will respond to you with disease and treatment information that has been reviewed by doctors and other professionals with expertise in bone marrow failure disease.
- Read our scientific research summaries for patients and caregivers
- Read our Frequently Asked Questions
Questions should be general in nature. We can not give medical advice. Always consult your physician to discuss your specific symptoms and conditions.
All of these services are designed for you to know that you are not alone in your experience living with aplastic anemia, MDs or PNH.
Hope can mean many things. As a noun, it describes the feeling that what you want can be had or that things will turn out for the best. As a verb, it means to look forward with desire and reasonable confidence.
As you read the “Stories of Hope”, you will see all those things reflected in people—men, women and children just like you—who are living with aplastic anemia, MDS or PNH. You will also see bravery and courage in the face of the unknown; optimism and excitement after things appeared very bleak; strength and resilience in spite of long odds; satisfaction and accomplishment even if the task was small step toward getting better. You see Hope.
We encourage you to use this Web site and all of our services to learn as much as you can, to gather support for the road ahead and to maintain hope. And always remember that you are not alone because we are here to help!