Build Relationships With Key Partners

With Industry

Many groups begin to connect to the pharmaceutical industry by reaching out to potential partners that include similar diseases or specific symptoms in their scope of work. Establishing relationships with industry can drive a stronger industry focus on therapy development for your disease and its associated symptoms. 

  • Your group can help educate your industry partners on:
    • The natural history of your disease.
    • Unmet medical needs. 
    • Symptoms or features most affecting patients’ quality of life.
    • Feasibility of protocol design.
    • Possible patient-reported outcome measures.
    • Patient/disease compatibility with drug administration.
  • Patient groups with registries that are also actively involved in the therapies development process can provide reassurance to industry that there is an increased possibility that enough patients will be able to be recruited for clinical trials. 
  • Global Genes provides several resources focused on working with industry from the patient group perspective.
    • Building the Bridge Between Foundations and Industry (2018) is a webinar providing advice on how and why to establish relationships with industry partners and some important aspects of managing those relationships. The webinar is an hour long. 
    • Searching for Answers: Contacting Biopharmaceutical Companies Effectively (2014) provides helpful tips about reaching out to biotech and pharmaceutical companies. Other topics include what to do before reaching out to the companies, how to request financial assistance, and resources to connect with patients and medical researchers. 
    • Research Development with Industry: Understanding Their Motivations (2015) is a video of a presentation and question and answer session focused on the role of industry in the development of drugs used to treat rare diseases. The presenters provide the industry perspective on collaboration with patient advocacy groups in drug development. The video is about one hour long.
    • Partnering with Pharmaceutical Companies in a Changing Landscape (2016) is a video of a presentation exploring the relationship between patient advocacy groups and pharmaceutical companies, including historical perspectives of this relationship and how it is evolving. A case study is presented about how to effectively work with industry, and thoughts about future changes in this relationship are discussed. The video is about 45 minutes long.
    • Patient’s Role in Designing Clinical Trials (2016) is a video of a presentation covering patient engagement in the research and development process. The presenters speak about the development of a set of specific recommendations for patient engagement: Effective Engagement with Patient Groups Around Clinical Trials . The presenters also provide case studies for turning these recommendations into real practice. The video is 40 minutes long.
  • Foundation-Company Partnerships Toolkits provides information on how to find the right partners and structure agreements with biotech and pharmaceutical companies in order to incentivize research. Other topics include venture philanthropy, nondisclosure agreements, negotiating strategies, and intellectual property. The information is compiled by The Research Acceleration and Innovation Network (TRAIN), the online platform for venture philanthropy in medical research supported by Faster Cures .
  • Foundation-Industry Relationships – A New Business Model: Joint-Venture Philanthropy in Therapy Development (2014) is a published article describing the collaborations and financial relationships between foundations and industry partners. This paper provides examples of how foundations for cystic fibrosis, spinal muscular atrophy, and Friedreich ataxia have worked to build a new joint venture philanthropy business model.
  • An Essential Partnership: A Guide for Charities Working with Industry (2014) is a guide for medical research charities looking to collaborate with industry. The guide illustrates the relationship between charities and industry through case studies, what charities should consider before entering partnerships, and different types of agreements and contracts. The resource was developed by the Association of Medical Research Charities (AMRC) which is based in the United Kingdom.
  • Guiding Principles for Interaction with Patient Advocacy Organizations briefly describes a set of principles that can be used by industry when interacting with patient organizations and thus offers what industry may be looking for from your group. This resource was developed by Biotechnology Innovation Organization (BIO).
  • Medical Device Innovation Consortium is a non-profit public-private partnership with the goal of improving the medical device environment. MDIC forms partnerships between the FDA, industry, and non-profit organizations in order to improve patient access to medical devices. 


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)