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To explore how rare disease patient groups can engage their community for fundraising, we organised a workshop on the topic last Friday (28th April). More than 30 delegates from patient groups joined us for our first ever full day workshop.

Our Executive Director, Flóra Raffai, opened the workshop with a brief introduction to Findacure and shared links to upcoming events we are organising. She also launched the latest course on our online portal: Raising Healthcare Professional Awareness. The new course is now freely accessible for all patient advocates and patient groups via [Click here to view her slides].

The first presentation was given by Mary Rose Roberts and Libbie Read from Findacure, who gave a comprehensive introduction to community fundraising. They shared the benefits of this fundraising approach as not just a way to raise funds, but also to raise awareness and build support for the patient group. They then walked through the different steps to planning a community fundraising project, with some examples from Findacure’s own activities. [Click here to view their slides][Click here to listen to their presentation]

Robin Marshall from AKU Society was next to speak, sharing his experience and tips to running local community fundraising events. Robin’s key message was while as a rare disease patient group, you may be a small organisation, it does not mean you have to have a small audience. He recommended patient groups define their case for support to demonstrate the value of their work to potential supporters. [Click here to view his slides][Click here to listen to his presentation]

Our next speaker was Callum Appleby from the Bone Cancer Research Trust, who delved into fundraising through challenge events. He shared that challenge events can be literally anything and that it is worth bearing in mind that what might be straight forward for one individual, may be very challenging for another. As a result, he recommended you offer a wide range of challenge events to suit the different skills and abilities of your community. [Click here to view his slides][Click here to listen to his presentation]

Our final speaker of the morning was Sharmila Nikapota from the Sohana Research Fund. Sharmila presented her key lessons learnt and top tips from running multiple special events over the past six years. She stressed the importance of having a clear vision and aim with your special event and to be realistic with your targets. Of all the community fundraising activities, special events are usually the most expensive to run and so you need to be sure you will make enough return to warrant the time, effort, and money. [Click here to view her slides][Click here to listen to her presentation]

After a networking lunch break, the workshop carried on with a panel discussion session. A wide variety of topics were discussed, ranging from the most fun fundraising activity our speakers had been involved in, to software to use to manage your supporters’ details and to mistakes made that could have been avoided. The panel discussion session was followed by a new addition to our workshop schedules for this year: an hour of structured group exercise. Our delegates were split into groups of twos or threes to work through a community fundraising booklet [click here to access] prepared by Findacure. This exercise aimed to direct our delegates to develop their own plans for future community fundraising events of their own. Some very interesting ideas emerged from the day, including a teddy bear picnic and a swim around the UK.

We would like to thank all of our lovely speakers for their informative presentations, White & Case for the beautiful venue and catering, and all of our delegates for participating.

We would like to say thank you to our funder Biomarin for providing financial support to cover the costs of this event. This event has been solely organised by Findacure and Biomarin has not determined the content.

Engaging your community for fundraising

by Mary Rose Roberts time to read: 3 min