Crowdfunding and rare diseases: an expanding phenomenon

by Robert Pleticha

We did a webinar about crowdfunding last year, and I attended the first ever UK Crowdfunding Day last November. Ever since, I’ve been thinking about how more rare disease patient groups and individuals can successfully crowdfund their projects. For a crowdfunding project to be reach its target, the active participation of your supporters and members is essential. Currently lacking an established support base on social media and in the real world? Maybe you need to hold off on a crowdfunding project.

For those that have established communication channels and established trust from your rare disease community, investigate crowdfunding to make your next project idea a reality.

Social media is the key to crowdfunding and getting people to contribute to your project. You should use your social media channels, blog, and website to fuel the communication about your crowdfunding campaign.

Try and get bloggers, medical experts, and other influencers in your disease sphere to write about and actively support your campaign. People of influence that support and are tied in to your campaign mean that others will be more likely to trust you and your organization’s ability to execute the proposed project.

Be realistic in the amount you are asking, projects less than 50,000 USD are more likely to be funded. Don’t set your budget too high. Try and find companies or businesses that will match your crowdfunding campaign for special recognition.

Will your rare disease project be socially focused? Or scientific in nature? Was a broad array of stakeholders in your rare disease community consulted during the campaign’s pre-planning phase?

chicken pox

Things to consider:

  • Crowdfunding takes a large amount of human resources to plan and implement a campaign. Your current activities would likely have to be scaled to a minimum during the campaign period.
  • Establish contact with the crowdfunding website you are using early. Ask for their advice on your campaign. Make them aware of your goals. Ask for advice.
  • A short video explaining your project is a must. It should be less than 2 minutes and easily shareable online. This means a pre investment in the campaign that has to be done months before the campaign starts.
  • You need the support of all our stakeholders: other rare disease organizations, individuals, researchers, social media connections, and everyone in your patient group to share and promote the campaign with guidance materials you create and provide to them. You need to communicate clearly where the funds are going and involve your stakeholder group as early in campaign development as possible.
  • You will need to adapt your communication strategy surrounding the campaign while it is going on. Not getting enough donors outside of your network? Reach out to the larger media. Referral traffic to your campaign only coming from Facebook? Set up a Twitter account to reach other possible supporters there.

Outline of steps in crowdfunding for rare diseases

  • Develop internal project plan.
  • Decide which crowdfunding platform will work best for you. 
  • Take plan to others outside your organization for ideas and critique. 
  • Create your campaign video that explains the need and how your project will fulfill that need.
  • Build the campaign on your chosen crowdfunding website. 
  • Contact your supporters and send them a short communication plan with templates, images and texts on how they can promote the campaign
  • Preload the campaign with donations from your loyal followers and family before doing a public launch.  It is critical to get some supporters to donate early. People are more likely to contribute when they see a significant amount of other people have as well.
  • Launch, announcements in media, press release.
  • Daily maintenance and special updates.
  • Halfway reminder, push people to share again and remind of importance of project.
  • Success.

Successful rare disease crowdfunding projects to consult:


ozED Family Camphrence 2015

Cure Black Bone Disease (Alkaptonuria)

Fundamental Diseases: It’s Time To Care

Stop Sanfilippo Foundation

Kawasaki Disease Challenge

Logan’s Syndrome

Howard’s Brain

Saving Eliza

Rare Genomics Institute (funding individuals): Daniel, Balaz, more…

I Lowe You: Lowe syndrome

We forgot your project? Add it in the comments…..

Other resources


RE(ACT) Community

Crowdfunding drug development: the state of play in oncology and rare diseases

Anatomy of the Crowd4Discovery crowdfunding campaign

The dynamics of crowdfunding: An exploratory study

Is it time for the public to start funding cancer research?

Share on FacebookTweet about this on TwitterShare on Google+Share on LinkedInEmail this to someone