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.
  • Global Genes webinar Strategies for Effective Fundraising (2016) is a 1-hour video focused on different fundraising strategies. The tips are especially valuable to small rare disease groups.
  • Global Genes also has online booklets to help you learn more about fundraising, including  Rare Toolkit: Finding Your Fundraising Strategy   (2016) and Rare Toolkit: Five Essential Tips and Tools for Effective Fundraising (2014).
  • Fundraising by the National Organization for Rare Disorders (NORD) is an easy-to-read webpage outlining fundraising steps and includes links to examples of successful fundraising activities of other groups.
  • Reach out to other groups to learn what has and has not worked for their group.
• 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:
    • NORD: Research Grant Program Funding .
  • List your grant programs with rare disease centers and organizations. For example:
    • • NORD: Additional Funding.
• 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: 
  • Milken Institute Center for Strategic Philanthropy provides information about philanthropic investing through its newsletter and Giving Smarter Guides. For example:
    • Nonprofits: A Growing Force in Drug Development
    • Center for Strategic Philanthropy Newsletter
  • FasterCures Toolkit Foundation-University Relationship provides:
    • Information about intellectual property, venture philanthropy, and foundation-university transformative partnerships. 
    • Sample templates for agreement documents and reports.
  • CureAccelerator FAQs Repurposing Research answers questions about repurposing approved therapies to treat a different condition, including ways for nonprofit groups to become involved. CureAccelerator is a  non-profit organization that brings researchers and funding opportunities together in order to drive repurposing research.
  • Section 4 : Funding Research of the Global Genes From Molecules to Medicine How Patients Can Share Their Voices Throughout the Drug Development Process (2018) reviews the ways a group can become involved in funding research and shares the success stories of two rare disease groups.

Resources