grant

Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium Pilot/Feasibility Governance Core

Organization CHILDREN'S HOSP OF PHILADELPHIALocation PHILADELPHIA, UNITED STATESPosted 19 Aug 2025Deadline 31 May 2030
NIHUS FederalResearch GrantFY2025AccelerationAddressAdvisory CommitteesAdvocacyAffectAwardCaringClinicalClinical ResearchClinical StudyClinical TrialsCollaborationsCommunitiesConsensusCraniosynostosisDentalDevelopmentDiagnosisDisciplineDiseaseDisorderDisparateFamilyFeasibility StudiesFosteringFoundationsFundingGoalsIndustryInfrastructureInvestigationInvestigatorsMedicalMissionNational Institutes of HealthNatural HistoryOrphan DiseaseOutcome StudyPatient CarePatient Care DeliveryPatient advocacyPatientsPilot ProjectsPoliciesProcessRare DiseasesRare DisorderResearchResearch PersonnelResearch ResourcesResearchersResourcesSpecialtyTalentsTask ForcesTestingTrainingUnited States National Institutes of Healthadvisory teamcare for patientscare of patientscare providerscareercaring for patientsclinical painclinical practiceclinical translationclinical trial readinessclinically translatablecraniofacialcraniofaciesdata sharingdevelopmentalfundamental researchhuman subjectimprovedinnovateinnovationinnovativeinsightinterestmedical specialtiesnew diagnosticsnew drug treatmentsnew drugsnew pharmacological therapeuticnew therapeutic approachnew therapeutic interventionnew therapeutic strategiesnew therapeuticsnew therapynew therapy approachesnew treatment approachnew treatment strategynext generation diagnosticsnext generation therapeuticsnovel diagnosticsnovel drug treatmentsnovel drugsnovel pharmaco-therapeuticnovel pharmacological therapeuticnovel therapeutic approachnovel therapeutic interventionnovel therapeutic strategiesnovel therapeuticsnovel therapynovel therapy approachorphan disorderparticipant engagementpatient advocacy grouppatient engagementpilot studypre-clinicalpreclinicalrecruit
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ABSTRACT: PILOT / FEASIBILITY GOVERNANCE CORE
The Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium will advance high impact ideas
through the Pilot/Feasibility Governance Core, focused on a mission to improve care for patients and families
affected by syndromic craniosynostosis (CS). In the Pilot/Feasibility Governance Core…

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Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium Pilot/Feasibility Governance Core — CHILDREN'S HOSP | Dev Procure