News and Treatment Updates

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.

Research Identifies How Gene Mechanisms Influence Pediatric MDS

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Each year, approximately 1 in every 1 million infants is diagnosed with pediatric myelodysplastic syndromes (MDS), a group of rare disorders characterized by the abnormal or deficient formation of blood cells in the bone marrow. However, researchers wanted to understand the…

Structural Racism is a Mediator of Disparities in Acute Myeloid Leukemia Outcomes

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Key Points Structural racism (SR) assessed by census tract variables accounts for nearly all Black-white and Hispanic-white disparity in AML survival. Structural Racism is a stronger mediator of survival disparities than molecular features, co-morbidities, healthcare access and…

Science Simplified: What is a Natural History Study?

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Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science accessible and empower rare disease community members with scientific knowledge. Dr…

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