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Managing a rare disease patient group workshop

Our third workshop focused on how rare disease advocates can manage their patient groups.

This workshop saw 37 representatives from patient groups and research teams come together at the Royal College of Nursing for Findacure’s fourth workshop of 2014, to discuss how to manage a small rare disease patient group.

Flóra Raffai, Project Manager at Findacure, opened the workshop by explaining the crucial role patient groups can play in developing treatments and patient support within their rare disease areas. She then explained the importance of rare disease research, as it holds within the key not only to help millions of rare disease patients, but countless others through the fundamental insights into common conditions and human physiology.  Flóra concluded her talk with a brief update on Findacure’s projects to be launched in the remainder of 2014.

Grace Smith - Directory of Social Change

Grace Smith, trainer at the Directory of Social Change, followed by presenting on the six different legal structures a patient group could take. She provided a comprehensive overview of each, delving into the benefits and restrictions of each structure. Grace also explained the responsibilities of trustees and directors of each structure.

Ed Owen - Cystic Fibrosis Trust

Ed Owen, Chief Executive of the Cystic Fibrosis Trust, shared his experiences managing a well-developed patient group organisation, and how it is crucial to keep patients at the heart of all patient organisations. He emphasised that as a group grows and there are more stakeholders involved, it is important to have structures in place to avoid losing important voices in the mix.

Nick Sireau - Findacure and AKU Society

Following this, Dr Nick Sireau, Founder of Findacure and CEO of the AKU Society, presented on five governance challenges for patient groups and how to solve them. He stressed that at the heart of any organisation, there must be trust. Without this trust, the organisation can fall apart around petty office politics, hidden agendas, and a lack of focus on results.

Dan Lewi - CATS Foundation

The final talk was given by Daniel Lewi, Co-Founder and Director of The CATS Foundation, who shared his story of setting up a patient group following the diagnosis of his daughter. He emphasised the need for a point of difference for patient groups to succeed and to stand out in the competitive UK charity environment.


Findacure would like to thank all the speakers for their informative and inspiring talks, Royal College of Nursing for the lovely venue, as well as all the delegates for their contribution to the day’s discussion. We look forward to seeing you at our future workshops and events.


How to manage a rare disease patient group

by Libbie Read time to read: 6 min