US EditionPatients for Patient Safety in the Context of Rare Diseases
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MSU Researcher Awarded National Grant to Study Rare Childhood Lung Disease
Ripla Arora received the Pulmonary Hypertension Association (PHA) Pediatric PH Research Award to expand on research she started over ten years ago while studying embryology. The $65K award from the PHA will enable Arora to delve deeper into the biology of TBX4 and TBX5 gene mutations. [Michigan State University (MSU)] Press Release
Thematic: InstitutionalDescriptive: On Friday, June 20, 2025, from 4am until midnight, the Hospital de la Pitié-Salpêtrière will become the theatre of VEXATHON, a musical marathon for rare diseases, within the framework of the Music Fevers 2025, festival organized by Sorbonne University and the AP-HP. On hypnotic and repetitive music by Erik Satie — Les Vexations — 110 pianists will take turns for more than 16 hours to make this unique work hear…
Patients for Patient Safety in the Context of Rare Diseases
Background: The active involvement of patients and their families in patient safety is essential in healthcare systems. Citizen Science can be useful for this purpose, especially for rare diseases, by gathering data and contributions from patients to design safer environments....
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