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A-Z to setting up a patient group workshop

Our second workshop of 2017 introduced patient groups to some of the key governance and administrative aspects of setting up a charity.

Patient groups play a vital role in the rare diseases community – providing support, guidance and information to patients and their family members. But many groups don’t know where to start when it comes to establishing themselves and getting off the ground. With this in mind, on Friday 9th June we hosted our second full day workshop on the “A-Z to setting up a patient group”. We were delighted to collaborate on this workshop with Genetic Alliance UK in providing a back to basics session for our delegates.

The workshop was opened by Mary Rose, Findacure’s Events Officer, and Mariana Campos, Public Engagement Manager for Genetic Alliance UK. Mary Rose used the opportunity to give an overview of Findacure’s patient empowerment projects, stressing the importance of patient groups, whilst Mariana introduced Genetic Alliance UK and their “Building Rare Communities” programme.

Brian Seaton - Principal Trustee, Small Charity Support

The first presentation of the day was given by Brian Seaton from Small Charity Support and Small Charity Coalition, who gave a comprehensive introduction to patient group and charity operating policies. Brian stressed the importance of an overarching governing document and having a business plan. Brian’s take home message was not to think too far ahead, as your plans will always change – a three year business plan can be more useful than a five year plan.


Andrew O'Brien - Director of Policy and Engagement, Charity Finance Group

Andrew O’Brien from the Charity Finance Group was next to speak. Andrew presented on the importance of creating and managing budgets. Andrew began by over viewing what a budget is, before explaining how to make one, why it’s so crucial, and who should be involved in the planning process. Andrew gave lots of useful of advice, which came in handy for our afternoon activity.


Diana Perry - Chief Executive, Ectodermal Dysplasia Society

Following a short break, Diana Perry from the Ectodermal Dysplasia Society provided a case study of how she set up her patient group and the growth they’ve undergone in the last 20 years. Diana outlined the difficulties they had starting out, how they recruited members for their trustee board and medical advisory board, and their employee expansion. Having grown the ED Society from one member of staff to four, Diana’s talk was particularly inspiring for patient groups in the room who were just starting out.


Uday Thakkar - Managing Director, Red Ochre, and DSC Associate

Our final presentation was delivered by Uday Thakkar, a DSC Associate. Uday gave an overview of the different models an organisation can take. Uday highlighted the importance of knowing what you want to achieve, and choosing a structure which will best help you in your aims. Uday presented the pros and cons of different models, including charities, trusts and voluntary associations.


Following a delicious lunch and our panel session, Genetic Alliance UK got the group started on the afternoon activity. This involved our attendees planning a family/information day for their beneficiaries and went through important tasks, such as setting a budget – and knowing what you need – defining a timeline to help prepare for the event, and how to raise funds. Useful advice was shared by all and everyone seemed to really benefit from this practical exercise.

We would like to say a big thank you to all of our excellent speakers for sharing their informative presentations, NCVO for hosting, and all of our delegates for attending.

We would like to say thank you to our funders Novartis and the John Ellerman Foundation for providing financial support to cover the costs of this event. This event was solely organised by Findacure and Genetic Alliance UK and our funders did not determine the content.


A-Z to setting up a patient group

by Libbie Read time to read: 6 min