The landscape of medical research is shifting: rare disease patient advocates are no longer just participants, they are the architects of discovery. Driven by an urgent need for life-saving treatments, these leaders are spearheading research initiatives with unprecedented momentum. To support this movement, Global Genes (IRDiRC Patient Advocates Constituent Committee member), in partnership with Boston […]
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IRDiRC is pleased to announce that COMBINEDBrain, represented by Terry Jo Bichell (CEO), has joined the IRDiRC Patient Advocacy Constituent Committee (PACC). The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders is a non-profit organization devoted to speeding the path to clinical treatments for people with rare genetic neurodevelopmental disorders by pooling efforts, studies, and data. […]
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