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Rare Diseases And Orphan Drugs: The Power Of Crowdfunding

March 28, 2013

What is crowdfunding and how can it help with rare diseases and orphan drug development ?

Crowdfunding per Wikipedia, is a “collective effort of individuals who network and pool their money, usually via the Internet, to support efforts initiated by other people or organizations.” Crowdfunding is used to support many activities such as the support of artists by fans, political campaigns, startup company funding, free software development, and scientific research. Crowdfunding involves a partnership between two parties :

  1. The people or organizations that propose the projects that need to be funded
  2. The crowd of people who support or help fund the projects.

Crowdfunding is supported by an organization that brings together the crowd and the project initiators. “Crowdfunding fills the gap where Angel Investors and Venture Capitalists hesitate to invest”. Crowdfunding seems to be a trend that can be used by rare disease advocates as another way of raising funds to support rare disease research and orphan drug development.

The Rare Genomics Institute (RGI), is a 501(c)(3) not-for-profit organization funded mostly through donors. The mission of the organization is to “give families afflicted by rare genetic disorders access to genome sequencing and expert analysis. We bring together scientists who share our passion for helping rare disease patients and leverage the crowdfunding capabilities of the Internet to bring the hope of a cure to our patients.” Crowdfundng is used here to accumulate or gather genetic information from rare disease patients that will help to develop new treatments.

Another Crowdfunding organization launched on Rare Disease Day 2013, is Quantum Cures. The new organization is a 501(c)(3) not-for-profit organization that uses donated computer time to design drug molecules that will prevent or cure rare diseases. According to the organization, a computer sits idle for up to 20 hours a day, and that computer could be discovering molecules that will help with the treatment of rare diseases. Quantum Cures’ approach, Inverse Design, “is a revolutionary drug discovery platform accurate near 90% of the time and has shown exceptional sensitivity limiting cross-screen costs. This kind of drug discovery can identify highly qualified drug candidates at much lower cost in a shorter timeline.” The organization looks for donated computer resources to help with the drug discovery process. One can help by downloading, installing, and running the Quantum Cures screen saver software, which will help to discover new drugs using the otherwise unused computing time. Crowdfunding using donated idle computer time.

A popular crowdfunding platform is Kickstarter, which has helped to fund creative projects such as films, art, technology, music, and more. It is launched in April 2009, with over $500 million being pledged by more than 3 million people, for more than 35,000 projects.

Another new crowdfunding platform is Microryza, which is for the support of scientific research projects. One of Microryza’s co-founders, Cindy Wu, came up with the idea of a Kickstarter-type site for science projects after finding out she had no hope of getting a grant from the NIH to support her work. Ms. Wu did eventually get funding, only after pitching her project at a lab meeting. To help other drug researchers, Microryza was born.

For Microryza, people pool their money until the funding goal of a project is reached. The contributors get to see their supported research projects develop with updates and progress reports. Microryza is a full crowdfunding platform that allows researchers to launch their projects so that they can share it with the world. This crowdfunding platform is an ideal option outside of fellowships, grants, and awards for researchers requiring funding for new rare disease treatments.

A New York startup company, Poliwogg, may be the platform of the future, where small biotech companies raise money through crowdfunds. The future for crowdfunding may be where rare disease patients and advocacy organizations are the crowdfunders for the development of new treatments or orphan drugs for rare diseases. Poliwogg has spent the past year building a social platform for crowdfunding for biomedical R&D.

Please Note: “Handshake Stylised” by KVDP (Own work) [Public domain] | Wikimedia Commons.

Copyright © 2012-2013, Orphan Druganaut Blog. All rights reserved.

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One Comment
  1. Note that Kickstarter does not allow healthcare projects. This is why we started MedStartr.com where we enable crowdfunding, events, and challenges to support the revolution in healthcare.

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