Build Relationships With Key Partners

Tips for Success

  • Review Best Practices for Effective Patient Group Engagement (2015 to present) which provides resources that include recommendations on how and why patient groups should engage early and often with all stakeholders in the therapy development process. It also provides methods for assessing the financial value of patient engagement and evaluating the capabilities of patient groups to engage with other partners. The recommendations are presented in several formats, including an executive summary, full report, webinar, and tools. The resources are developed  by Clinical Trials Transformation Initiative (CTTI) .
  • Keep first email contact attempts brief and with a clear description of why you are contacting the person. 
    • If there is no answer in a few weeks, try reaching out again. Sometimes responding to an email just falls off a busy researcher’s list.
  • Develop a 5 to 10 minute elevator pitch that explains how far along your group is in the therapy development process, current goals, and a few of the obstacles. 
    • Remember to update the pitch as you move along in the process or goals or obstacles change.
    • The pitch can be helpful when you are at conferences and have a quick moment to talk to researchers, industry, and FDA and NIH staff—any of whom may become interested in your disease research, provide suggestions, or be aware of developing advances that may help you overcome current obstacles. 
    • The pitch can also be helpful in those chance meetings, so having one prepared means you won’t miss an unexpected opportunity.
  • Learn what motivates the person with whom you are hoping to build a relationship and adapt your approach. For example, in addition to the rules and culture of their employer (academic, industry, or government), individuals may be motivated by a combination of:
    • A specific patient’s story.
    • Statistics and data.
    • Grant opportunities.
    • Publishing opportunities.
    • Wanting to make a difference.
    • Wanting to make a name.
  •  Understand what an individual can and not compromise when forming a relationship.
    • Negotiables and “must haves” are usually defined by their employer’s rules and culture, as well as regulatory rules and state and federal laws.
  • Be clear about areas you will and will not compromise to form a relationship. 
  • Prior to signing any agreement or contract, you may consider having a lawyer with experience in the therapy development process review the document(s).


With Academic Researchers and Clinicians
PubMed National Library of Medicine (NLM) (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) National Library of Medicine (NLM) (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)
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)
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)
Tips for Success
Best Practices for Effective Patient Group Engagement Clinical Trials Transformation Initiative (CTTI) (link)