Empower Your Patient Community Voice

Resources

Resources

Discovery Documentary: First in Human National Institutes of Health (NIH) (link)
Assessing Meaningful Engagement in Drug Development: A Definition, Framework, and Rubric University of Maryland Center of Excellence in Regulatory Science and Innovation (link)
Principles of Community Engagement: Second Edition Agency for Toxic Substances and Disease Registry (link)
GARD Organization Database Genetic and Rare Diseases Information Center (GARD) (link)
GARD Guide: Support for Patients and Families Genetic and Rare Diseases Information Center (GARD) (link)
Steps to Nonprofit Formation National Organization for Rare Disorders (NORD) (link)
Nonprofit Resources National Organization for Rare Disorders (NORD) (link)
What is a 501(c)(3)? Foundation Group (link)