Fund Discovery Research

Funding Research

Your group can help fund academic research or start-up medical research companies directly to ensure that relevant research for your disease is pursued. Funding discovery research directly can occur in several ways.

  • Fundraise: Your group can raise money to fund research through crowdsourcing, special events, group fundraisers, and other endeavors.
  • Offer research grants: Research grants usually do not include any stake in intellectual property or future revenues for a therapy developed through the funded research.  
    • Adjust the grant size offered to the abilities of your group. Sizes of grants can vary:
      • Microgrants can be a few thousand dollars.
      • Small grants can range from $25,000 to $50,000.
      • Large grants can be multi-million dollars.
    • Stimulate research interest by awarding the grant money through a Request for Proposals (RFPs) or Request for Applications (RFAs). Your Scientific/Medical Advisory Board can help determine the winning RFPs/RFAs. Grants offered in this way can:
      • Support researchers who already have a research project in progress.
      • Encourage researchers to propose and then pursue new research ideas.
      • Entice new investigators in the field to become involved in your rare disease.
    • Offer a grant directly to a leading researcher in the field to pursue a project that fills a research gap identified by your group and scientific advisors.
    • Consider channeling the grant through larger umbrella organizations if you are uncertain whether your group has the time, experience, or energy to manage the process. For example:
    • List your grant programs with rare disease centers and organizations. For example:
  • Invest through venture philanthropy: Although usually requiring a large sum of money, venture philanthropy provides your group with an opportunity to fund the early, often risky stages of therapy development with for-profit companies. 
    • These investments usually involve millions of dollars.
    • You can fund start-up medical research companies or programs within larger pharmaceutical companies willing to focus on developing a treatment or cure for your disease(s).
    • Your group will gain an equity stake (a percentage) in the company or royalty rights of the developed therapy. 
    • Since profit is not the goal, if a therapy is successfully developed, equity stakes or royalty rights can be sold to raise money for future ventures. 
    • Venture philanthropy may also allow your group high levels of engagement with the company and/or program, thus enabling your group to provide patient perspective during the discovery stage.  
    • Due to the financial risk involved, it is important to work with your Scientific/Medical Advisory Board to determine whether the investment is a wise choice for your group’s efforts. You may also wish to consult with a business lawyer.
    • The Cystic Fibrosis Foundation pioneered the venture philanthropy model and shares their journey on the following webpage:  CF Foundation Venture Philanthropy Model .
  • Other resources: 


Federal Funding Opportunities
Grants and Funding Application Due Dates National Institutes of Health (NIH) (link)
R21 Contacts and Special Interests National Institutes of Health (NIH) (link)
Find Funding: NIH Guide for Grants and Contracts National Institutes of Health (NIH) (link)
SBIR|STTR America Seed Fund National Institutes of Health (NIH) (link)
HHS SBIR/STTR Agency Contact Information National Institutes of Health (NIH) (link)
NIH Types of Research Grants National Institutes of Health (NIH) (link)
NCATS Funding and Notices National Center for Advancing Translational Sciences (NCATS) (link)
NIH Tips for Applicants National Institutes of Health (NIH) (link)
NIH Grants YouTube Page National Institutes of Health (NIH) (link)
NIH Grants Process Overview National Institutes of Health (NIH) (link)
OOPD Pediatric Device Consortia Grants U. S. Food and Drug Administration (FDA) (link)