Crowdfunding for Rare Diseases

by Robert Pleticha

There has been an increase in crowdfunding projects and websites over the past year. It seems that crowdfunding (gather small amounts of money from individuals) and rare diseases (dispersed population) could make a good match. This webinar aims at beginning the discussion on how crowdfunding can be most effectively used by rare disease patient groups to further research on the disease.




Introduction to crowdfunding and rare diseases, Denis Costello, EURORDIS:




What is crowdfundingBarry James, the Social Foundation:

View Barry’s slides

nickHelp us cure black bone disease“: Nick Sireau (founder and Charman of the AKU Society) about the tactics he and his team are using to raise $98,000 to crowfund an international clinical trial. This campaign reached its goal and can be viewed here:

Download Nick’s slides


Discussion: how can crowdfunding be effectively used for rare disease projects?


Barry’s notes on crowdfunding and rare diseases

  • Crowdfunding is particularly well suited for rare diseases – mainly because of the community aspect
  • It has huge potential to fill a need (for care) that does not fit the traditional mass-market driven capital-intensive models driving medicine and pharmas
  • It’s a child of social media – and so is suited to reaching out from an existing base to a wider group of people who care – or who might in the future
  • Social media engagement and skills are therefore crucial – ideally combined with PR
  • Donation / Rewards crowdfunding is the most appropriate form (although Equity may be applicable in some cases when there’s a product / company)
  • Preparation and planning are crucial
  • It’s a community building and marketing thing – expect to commit fully to it for the period of the campaign (30 days can seem a long time)
  • Little or no upfront costs – apart from time (and intensive effort)
  • Video is (almost) essential – people like to see who they’re dealing with
  • Appeals that have a visual and /or a human (heart-strings) element are easiest – but others can be pulled of with imagination and creativity
  • You get two advantages (1) a crowd and (2) funding.- the clue is in the name. The very process gives you greater engagement with your audience and a major opportunity to grow it. Plus funding.
  • It’s not a one-off – you can come back again and again with the right proposition
  • If at first you don’t succeed… you can try again. Some of the most successful campaigns have been preceded by a failed one, from which much was learned.
  • Get creative with your rewards – and have a good range, from those that just signal goodwill (for a few pounds) a mid one around £30 – £50 (the average for many campaigns) to some really hefty ones (£500, £1,000 or more) – some people want to really – push the boat out and have the cash to spare.
  • The best rewards are those that create a human / emotional connection and those that people can’t get anywhere else (eg. meet a scientist, visit a lab etc). They don’t have to cost much (or any) money to be valuable.
  • Crowdfunding is what Thomas Power calls the new ORS economy: Open, Random and Supportive – challenge your expectation – approached in the right way people in social media – especially with any kind of connection with you – are likely to be open and supportive (even if your approach comes at them from in a random / social direction – ie they stumble across your campaign via a friend).7
  • We will help all we can. should be a good resource (let us know what else you might like from us) as may the Crowdfunding: Deep Impact conference – but feel free to contact me direct if you think I can help


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