News & Events

Setting up a patient group: the A-Z

Last Reviewed 12/06/2017

By Mariana Campos

On Friday, 9 June we organised an event with Findacure as part of the Building Rare Communities project. The ‘A-Z of setting up a support group’ workshop aimed at helping newly established groups to get off the ground and to help those who had taken the first steps to further develop the group. The workshop also gave groups the opportunity to network with other patient groups.

The day started with a talk from Brian Seaton from Small Charity Support and Small Charity Coalition, who introduced the importance of developing governing documents and business plans. Brian acknowledged that, for small charities, the task of defining a business plan might be daunting and suggested not to over plan. His suggestion was to start with a three-year plan and rethink it as you go.

We then heard from Andrew O’Brien from Charity Finance Group on the importance of setting up realistic budgets for your organisation and activities. He also highlighted the importance of involving those who will be delivering the projects in the design of those budgets.

Diana Perry from Ectodermal Dysplasia Society told us her experience of setting up a patient group: from the initial decision of setting up the group, to developing a website in a non-Facebook era, to recruiting trustees and medical advisors. Diana’s take home message was the possibility of asking for help and not re-inventing the wheel.

Our last speaker was Uday Thakkar from The Directory of Social Change. Uday discussed the different legal structures a patient group can take and the implications of each structure. His key suggestion, welcomed by our participants, was to choose the simplest structure that allows you to meet your aims.

During the afternoon we invited participants to plan a family or information day. We guided participants through the process of setting a budget, defining a timeline to prepare for the event, and raising the funds to run the event.

Some of the take home messages from our participants were:

“This is a marathon, not a sprint, don't rush, be very clear about what your end objectives are and why, get a reliable set of supporters around you and keep passionate about what you are trying to succeed.”
“Have a clear vision of what you want to achieve. Use the resources and support that is available around you- rather than expecting to do it all yourself. Be patient, and take your time.”


If you’re interested in being involved in future events from Building Rare Communities project contact Mariana Campos.

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