Participate in Research
Patients can make a difference in the development of future treatments and the improvement of outcomes by participating in research. Check out the sections here to discover if any of these options are suitable for you.
Pediatric
Understanding Clinical Trials
Clinical research Clinical research: A type of research that involves individual persons or a group of people.
Advice for Caregivers
The National Family Caregivers Association's Director of Caregiver Wellness Programs, Jane Meier Hamilton, RN, MSN, has been a nurse for 40 years and family caregiver for 20 years. In a recent interview, she offered advice for family caregivers.
Is it true to say that many people don’t realize that they are caregivers?
Fundraise
Raising money for AAMDSIF through fundraising events also raises awareness for rare bone marrow failure bone marrow failure: A condition that
Ways to Give
Your financial donation is the best way to ensure patients get the support they need. There are several creative ways you can give.
Medical Research Basics
Learn about the process to bring new therapies and treatments to patients.
Here are explanations of why and how research is developed, the different types of research involved, and how registries are used to improve the lives of patients.
2023 Salt Lake City Patient and Family Conference
Thank you for attending the 2023 Salt Lake City Patient and Family Conference. We will keep uploading presentations as we receive them, please keep checking back for updates.
Presentation Materials:
Predisposition to Inherited Bone Marrow Failure Syndromes
Aplastic Anemia and Non-Transplant Therapies
Patient Panel: Addressing Patient Challenges and Barriers - Patient & Family Conference Utah 2023
Topic(s)
Related Bone Marrow Failure Diseases and Malignancies
Pediatric Bone Marrow Failure Diseases
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Bone Marrow Transplant
Aplastic Anemia
Living Well with Bone Marrow Failure
Myelodysplastic Syndromes (MDS)
Acute Myeloid Leukemia (AML)
Watch this informative patient panel from the 2023 Patient and Family Conference in Salt Lake City, Utah. This session was led by Jill Gahlsford, RN, of Huntsman Cancer Institute.
Transplant for Aplastic Anemia from the Patient and Family Conference in Salt Lake City, UT, 2023
Topic(s)
Pediatric Bone Marrow Failure Diseases
Bone Marrow Transplant
Aplastic Anemia
Presenter(s)
Michael Pulsipher, MD
Michael Pulsipher, MD, Primary Children's Hospital, explains the details of bone marrow transplant for aplastic anemia in this presentation. He explains how doctors determine when to recommend a transplant and the method of treatment.