Accessing funding as a small patient group workshop

Our first ever patient group workshop focused on accessing funding.

Findacure’s first patient group workshop took place at White & Case LLP in London, with over 40 people attending, representing 35 different patient groups and organisations. The focus of the event was on different funding sources that patient groups can apply to in order to grow their organisations and support research.

Nick Sireau, Chairman and Co-founder of Findacure, opened the workshop with an introduction to Findacure as an organisation focused on supporting patient groups in building their organisations and empowering them to get involved in research. He also presented the concept of fundamental diseases as a term to unite rare diseases and engage the publics’, as well as researchers’, interest through its promise for understanding the mechanisms of common diseases.

Oliver Timmis - AKU Society

Oliver Timmis followed as the first speaker from a successful patient group. Oliver shared tips and advice on applying to trusts from his experiences as Head of Projects at the AKU Society, focusing on two key case studies: the Big Lottery Fund and the European Commission funding. He also highlighted the viability of crowdfunding for rare diseases, using the AKU Society’s successful ‘Help Us Cure Black Bone Disease’ campaign as an example.

Rachel Collinson - Fundraising Consultant

The first talk from a fundraising consultant then followed with Rachel Collinson, also known as the ‘Support Whisperer’, delving into how to digitally fundraise on a budget. Rachel emphasised the importance of maintaining a constant relationship with online supporters through frequent mailings and the need for a personal ‘SUCCESS’ [Simple, Unexpected, Concrete, Credible, Emotional, Stories = Success] story.

Kay Parkinson - Alström Syndrome UK

Following a short break, the second talk from a patient group of the day took place. Kay Parkinson shared her ‘SUCCESS’ story of setting up Alström Syndrome UK following repeated misdiagnoses of her two children. The story of her starting out by earning her law degree in hospital waiting rooms and holding impromptu clinics in hotel rooms, ending with Alström Syndrome UK being a trail-blazer in the rare disease community was a truly inspirational story.

Fabienne Poulet - Midas Appeals

Fabienne Poulet, Partner at Midas Appeals, finished off the day with a very pragmatic talk on how to apply to trusts, statutory funds, and corporates. She broke down each application, from the first steps of making the approach to the language and format that should be used.

Findacure would like to thank all the speakers for their informative and interesting talks, White & Case LLP for the lovely venue, as well as all the attendees. We look forward to seeing you at our future workshops.