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Here's where you'll find a regularly updated, broad range of articles written by the AAMDSIF team, allied health organizations and news organizations. By staying well-informed, patients and families are practicing a form of self-support that will help them be more effective self-advocates when engaging with health care providers.

December 2019 Foundation Update:  Holiday Edition

Originally Published: 12/20/2019

Symptomatic Heart Failure in Acute Leukemia Patients Treated With Anthracyclines

Originally Published: 12/17/2019
Objectives The purpose of this study was to investigate the occurrence and develop a risk score for heart failure (HF) in acute leukemia.

ASH 2019: Can Rapid Precision Medicine Help Older Adults With AML?

Originally Published: 12/07/2019
When someone is diagnosed with acute myeloid leukemia (AML), doctors typically initiate treatment within 24-48 hours of diagnosis given the aggressive nature of the disease. This urgency to treat precludes the use of ancillary test results, such as genomic profiling, to guide upfront treatment decision making and clinical management. Yet, understanding the genomic alterations associated with a patient’s disease is critical and can help enable oncologists to identify the most effective, targeted treatment options. (con't)

Allogeneic Hematopoietic Cell Transplantation and Other Expensive Cellular Therapies: A Miracle for the Few but Off Limits to Many?

Originally Published: 11/15/2019
The number of patients undergoing allogeneic hematopoietic cell transplantation (HCT) for treatment of malignant and nonmalignant disorders has continued to grow worldwide. (footnotes) Great progress has been made in overcoming HLA/immunologic barriers, but nondonor barriers to HCT persist.(footnote) This represents a major unmet need because HCT is not accessible to everyone who would benefit from it.(footnote)

November 2019 AAMDSIF Update Newsletter

Originally Published: 11/14/2019

Summer 2019 MDS Update

Originally Published: 11/08/2019
Read the latest in what's happening in MDS research, hear from MDS patients and so much more! 

Genomic Biomarkers to Predict Resistance to Hypomethylating Agents in Patients With Myelodysplastic Syndromes Using Artificial Intelligence

Originally Published: 10/29/2019
We developed an unbiased framework to study the association of several mutations in predicting resistance to hypomethylating agents (HMAs) in patients with myelodysplastic syndromes (MDS), analogous to consumer and commercial recommender systems in which customers who bought products A and B are likely to buy C: patients who have a mutation in gene A and gene B are likely to respond or not respond to HMAs.

Dr. Babushok on Treatment Advances in Paroxysmal Nocturnal Hemoglobinuria

Originally Published: 10/24/2019
Daria V. Babushok, MD, PhD, an assistant professor of medicine, Perelman School of Medicine, University of Pennsylvania, discusses treatment advances in paroxysmal nocturnal hemoglobinuria (PNH).

When Your Child With a Rare Disease Doesn’t Feel Brave

Originally Published: 10/24/2019
Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should! Courage shows up in many ways all around you. Courage is standing up for a friend, helping someone in need or sticking with something that is hard for you to do. They say that having courage makes you a better person, and courage is one of the most important faculties you can develop.   But what if being brave and courageous was...

October 2019 AAMDSIF Update Newsletter

Originally Published: 10/20/2019
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