Determine Patients’ Needs

Resources

Resources

List of Registries National Institutes of Health Clinical Center (link)
FAQ Orphan Products Natural History Grants Program U.S. Food and Drug Administration (FDA) (link)
OOPD Grant Application Overview U.S. Food and Drug Administration (FDA) (link)
Natural History Clinical Trials Global Genes Rare Patient Advocacy Summit 2016 (link)
Rare Diseases Registry Program (RaDaR) National Center for Advancing Translational Sciences (link)
FDA-led Patient-Focused Drug Development (PFDD) Public Meetings U.S. Federal Food and Drug Administration (FDA) (link)
FDA’s CDER Patient-Focused Drug Development Program Staff U.S. Federal Food and Drug Administration (FDA) (link)
Externally-led Patient-Focused Drug Development Meetings U.S. Federal Food and Drug Administration (FDA) (link)