Build Relationships With Key Partners

Resources

With Academic Researchers and Clinicians

PubMed National Library of Medicine (NLM) (link)

Creating Alerts: PubMed NIH Library (link)

GeneReviews National Library of Medicine (NLM) (link)

NORD Rare Disease Information National Organization for Rare Disorders (NORD) (link)

UpToDate Wolters Kluwer (link)

Research Portfolio Online Reporting Tool (RePORTER) National Institutes of Health (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)

With Government

FDA For Patients Website 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)

Regulatory Advocacy: Patient Organization Case Studies on Working with the FDA Global Genes (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)

With Industry

Building the Bridge Between Foundations and Industry Global Genes (link)

Searching for Answers: Contacting Biopharmaceutical Companies Effectively Global Genes (link)

Research Development with Industry: Understanding Their Motivations Global Genes (link)

Partnering with Pharmaceutical Companies in a Changing Landscape Global Genes (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 (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)

Medical Device Innovation Consortium MDIC (link)

Tips for Success

Best Practices for Effective Patient Group Engagement Clinical Trials Transformation Initiative (CTTI) (link)