Empower Your Patient Community Voice
Resources
Making a Difference
From Molecules to Medicine: How Patients Can Share Their Voices Throughout the Drug Development Process
Global Genes (link)
Data DIY – Your Involvement in Driving Understanding, Discovery, and Treatments for Rare Disease
Global Genes (link)
FDA Patient-Focused Drug Development Guidance Series for Enhancing the Incorporation of the Patient’s Voice in Medical Product Development and Regulatory Decision Making
U. S. Food and Drug Administration (FDA) (link)
Faster Cures Webinars
FasterCures (link)
FasterCures Patients Count Program
FasterCures (link)
On the Path to a Science of Patient Input
FasterCures (link)
Innovator Spotlight
FasterCures (link)
Discovery Documentary: First in Human
NIH Clinical Center (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)
Starting a Patient Group
So You Think You Want To Start A Nonprofit
Global Genes (link)
Starting A Nonprofit: The First Steps
Global Genes (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)