Empower Your Patient Community Voice

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)

Nonprofits: Innovators in Preclinical Drug Development FasterCures (link)

FasterCures Webinars FasterCures (link)

From Anecdotal to Actionable: The Case for Patient Perspective Data 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 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)

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)