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Fundraising for rare disease patient groups

Our second workshop of 2018 took place on Friday 29th June and helped patient groups to improve their fundraising.

Being able to raise funds is critical for any rare disease patient group. While many begin as volunteer-led organisations – often by parents and patients themselves – as these groups grow, look to increase the size of their team and improve the services and support they provide, they have to ensure they have the right resources in place. Arguably, funding is the greatest resource a patient group requires. But if you’ve never worked in the charity sector before, the mere notion of fundraising can be an incredibly daunting prospect.

With this in mind, on Friday 29th June we held our second workshop of 2018 on the topic of “Fundraising for Rare Disease Patient Groups” at the Royal College of Paediatrics and Child Health in London.


Beth Upton - CEO, Money Tree Fundraising

Our first speaker was Beth Upton, CEO and Founder of Money Tree Fundraising. Beth, who across 14 years has raised millions of pounds for various causes, joined us to discuss how patient groups can ensure they have a thriving grant fundraising programme. Throughout her presentation, Beth summarised four key ingredients all patient groups need: organisation readiness, a pipeline of prospective grantmakers, compelling proposals, and capacity to deliver programmes. Beth argued that patient groups will find it easier to secure funding if they have charitable status and a two-year track record of running projects, as many funders are unwilling to give to non-charities. She also stressed the need to have clear evidence for why your organisation exists, be able to clarify the urgency behind your work, and have the ability to tell a compelling story that funders can buy into and support. Finally, Beth highlighted the need to make sure you have the right person for the job, hiring people who have the right skills for fundraising and making sure they are kept fully informed on both the project and financial direction of your organisation.

Frances Greaney - Trust and Legacy Fundraiser, DEBRA

Next up was Frances Greaney, Trust and Legacy Fundraiser at DEBRA who presented on writing successful trust applications. Frances warned the audience to “avoid the bin”, stating that 80-90% of applications are rejected immediately because they don’t meet the trust’s priorities for funding. Therefore it is crucial that before making an application, patient organisations assess whether a particular trust is right for them, and if so, follow any guidelines that may be provided. Frances also pointed out as rare disease charities, it is unlikely that the person who ultimately reads your application will ever have heard of the condition you support. As a result, it’s important to keep your application simple – quickly and concisely telling your charity’s story, keeping the scientific and medical details limited, and demonstrating the impact the condition has on people’s lives. For a really compelling proposal, Frances suggested using photos and quotes from your own community, not only showing how their rare disease affects them but also how your organisation has helped them. Finally, using her own experience at DEBRA, Frances summarised the key elements which need to go into a good application, including, the outcomes you aim to achieve, how you will evaluate and measure success, the timescale of your project, and a breakdown of the resources you require funding for.

Dr Rick Thompson - CEO, Findacure

Our final speaker of the morning was Findacure’s own CEO, Rick Thompson. With Beth and Frances focusing on trust and foundation applications, Rick addressed another area of fundraising – company giving. Rick began by explaining some key reasons why corporates want to give to charities. Firstly, companies are concerned with their public image and perception of their brand, and secondly, they want to create a positive atmosphere within their own organisation. Working with charities helps in these areas as it promotes the idea that the company is socially responsible, and allows employees to feel like they’re making a difference to a specific cause. Rick then went on to overview three major routes for company giving – corporate grants, event sponsorship and active engagement. When looking at sponsorship, Rick put forward that this should be viewed more as a conventional business agreement, targeting marketing budgets, where charities can offer a company a set of benefits which allow the company to promote itself. Finally, Rick gave examples of where companies can actively engage with charities, whether this is through pro bono support, funding and delivering a specific project, or even running fundraising events on behalf of your organisation.


Katie Rabone - Director, Fundraising Action

Following lunch, we were joined by Katie Rabone, Director of Fundraising Action and an Associate Trainer at the Directory of Social Change. Katie came to deliver a training session to our delegates on developing a fundraising strategy, which included discussing how and why organisations should involve its stakeholders when formulating a fundraising strategy, internal and external factors which need to be considered – such as who your audience is, the capacity of your team, and what the financial market looks like – and the importance of an easily identifiable mission and vision statement. The highlight of this session was an activity where we were asked to share what we thought fundraising meant, through the form of Lego. One group created a scene where multiple people were fighting over a single 50p – demonstrating how saturated the fundraising sector can be when thousands of charities are applying for the same pot of funding.

We would like to a say a huge thank you to everyone who came along to our workshop, and of course to all of our speakers for sharing their expertise and experiencewith us. We would also like to thank the following funders for supporting our Patient Empowerment Workshop Programme 2018: AbbVie, Amgen and Novartis.


Fundraising for rare disease patient groups

by Libbie Read time to read: 6 min