Build Relationships With Key Partners
Resources
Resources
Creating Alerts: PubMed
NIH Library (link)
GeneReviews
National Library of Medicine (NLM) (link)
NORD Rare Disease Information
National Organization for Rare Disorders (NORD) (link)
Research Portfolio Online Reporting Tool (RePORTER)
National Institutes of (NIH) (link)
ClinicalTrials.gov
National Library of Medicine (NLM) (link)
CenterWatch Clinical Trial Listings
CenterWatch (link)
Find A Genetic Counselor
National Society of Genetic Counselors (NSGC) (link)
Find A Genetics Clinic
American Medical College of Genetics and Genomics (AMCG) (link)
Rare Diseases Clinical Research Network (RDCRN)
National Center for Advancing Translational Sciences (NCATS) (link)
From Molecules to Medicines: How Patients Can Share Their Voices Throughout the Drug Development Process (Section 4)
Global Genes (link)
For Patients
U.S. Food and Drug Administration (FDA) (link)
Learn About FDA Patient Engagement
U.S. Food and Drug Administration (FDA) (link)
Developing Products for Rare Diseases & Conditions
U.S. Food and Drug Administration (FDA) (link)
FDA Patient Affairs
U.S. Food and Drug Administration (FDA) (link)
Working with Regulators: A Focus on the FDA
Cancer Policy Institute at the Cancer Support Community (link)
List of NIH Institutes, Centers, and Offices
National Institutes of Health (NIH) (link)
Find NIH Clinical Center Trials
National Institutes of Health (NIH) (link)
NCATS Patient/Community Engagement & Health Information
National Center for Advancing Translational Sciences (NCATS) (link)
Patient's Role in Designing Clinical Trials
Global Genes (link)
Effective Engagement with Patient Groups Around Clinical Trials
Clinical Trials Transformation Initiative (CTTI) (link)
Foundation-Company Partnerships Toolkits
FasterCures The Research Acceleration and Innovation Network (TRAIN) (link)
Foundation-Industry Relationships - A New Business Model: Joint-Venture Philanthropy in Therapy Development
Current Topics In Medicinal Chemistry (link)
An Essential Partnership: A Guide for Charities Working with Industry
Association of Medical Research Charities (AMRC) (link)
Guiding Principles for Interaction with Patient Advocacy Organizations
Biotechnology Innovation Organization (BIO) (link)
Best Practices for Effective Patient Group Engagement
Clinical Trials Transformation Initiative (CTTI) (link)