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Crowdfunding for rare disease patient groups workshop

Our last workshop of 2015 introduced patient groups to crowdfunding and explored how they can use it to fundraise for their projects.

It can be incredibly difficult to fundraise for rare diseases, especially from traditional sources of funding like trusts and foundations. Rare diseases often get overlooked for more common conditions, where the impact of funding is seen as more significant. This is why patient groups are increasingly looking for alternative funding to run their projects and support medical research.

One such alternative source of funding is crowdfunding. Crowdfunding is the practice of funding a project by raising small amounts of money from a large number of people, usually via the Internet. The term arose fairly recently, following the 2008 financial crisis, as public spending and private lending pools shrank.

It was around this topic of ‘crowdfunding’ that we organised our latest training workshop for rare disease patient groups. We had 37 delegates join us and our four speakers in central London to discuss how best to develop and run a crowdfunding campaign.

Kelly Angood - UK Tech, Design and Hardware, Indiegogo

We first heard from Kelly Angood from Indiegogo, the world’s largest crowdfunding platform. Kelly explained that crowdfunding is not just about raising funds, it is also about building interest, awareness, and a community around your projects and your organisation. Her top tips for running a successful campaign were to set an attainable goal, to create a compelling pitch, offer unique perks, and proactively reach out to the ‘crowd’ to secure your funds.


Sorsha Roberts - Online Communications Officer, AKU Society

Our next speaker, Sorsha Roberts from AKU Society, delved into motivating your patient community around your crowdfunding campaign. Sorsha stressed that your greatest resource as a patient group is your patients: they understand your cause the best, they are most motivated to see the campaign succeed, and they have wide networks they can get engaged in the campaign as well. The main take away from her presentation was to involve your patients from the early planning stages with a patient committee, who can guide the campaign in a way that most appeals to all patients.


Kate Eggleshaw - Crowdfunding Marketing Lead, JustGiving

Kate Eggleshaw from JustGiving, the world’s leading social giving platform, followed with a presentation on getting the ‘crowd’ to take notice. She introduced JustGiving’s new crowdfunding service, which lets individuals and now charities crowdfunding for projects. Kate emphasised the importance of telling your story in crowdfunding, to share why you care about your project. She also highlighted the importance of reaching out to the ‘crowd’ prior to launching to build buzz and encourage donations.

The workshop was closed with a masterclass from myself, Flóra Raffai, here at Findacure. The masterclass was a more interactive discussion of the stages to running a successful crowdfunding campaign. I shared my lessons learnt from Findacure’s first crowdfunding campaign last year, and lessons being learnt from an exciting new campaign we will be launching in a few weeks’ time. With the delegates, we worked through a crowdfunding workbook I put together to aid planning of their own campaigns.

I would like to thank all our lovely speakers for their informative presentations, the Charles Darwin House team for the workshop space, Zuhura Plummer for her graphic recording of the event, Arnab Ghosal for his photography, and all of our delegates for joining us on the day!


Introduction to crowdfunding

by Libbie Read time to read: 6 min