What We Do

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Parent Powered Innovation is a nonprofit organization that supports parents of children with rare diseases drive the sciences to develop better therapies by leveraging recent scientific advances.

Parent Powered Innovation supports parents in their quest of finding better treatments for their children’s rare diseases by:

  • Providing mentorship and guidance as it relates to:
    • Starting and managing a biotechnology project or company;
    • Working with pharma companies to bring existing drugs to market or develop new treatments;
    • Identifying most relevant scientific advances and technologies that could be applied to find a cure for a specific disease;
    • Identifying and working with relevant academic researchers and government institutions (e.g., NORD, NCATS, etc);
    • Starting clinical trials for new or repurposed drugs;
    • Accessing sources of funding;
    • Working with the FDA to achieve accelerated approval for new treatments or access to new experimental drugs.
  • Providing seed funding to parents starting a project or company to develop a new treatment for a rare disease.
  • Connecting people who have the need, desire, knowledge, expertise and resources to develop cures for rare diseases (e.g., parents, patient organizations, relevant scientists, pharma companies, biotech companies, contract research organizations, regulators).
  • Establishing a Rare Disease Research Institute, which will be a center of excellence for repurposing drugs for rare diseases. This research institute will act as an incubator for parents who want to develop cures for their children for rare diseases. It will offer high-throughput screening platforms for drug repurposing and will be a testing ground for new technologies.