On 12th September, Findacure held a workshop at the Royal College of Nursing in London on how to manage a small rare diseases patient group.

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Our own CEO and Chairman, Nick Sireau, spoke on his experience managing the AKU Society. In this week’s blog we hear about some of the speakers and take a look at how the afternoon went.

Findacure is a charity dedicated to helping patient groups promote research and development of treatments for fundamental diseases. One of the ways they are achieving this is through educational workshops, which small patient groups or anyone wishing to set up a patient group, can attend for free. This workshop focussed on the practical management of a small rare disease patient group.

Flόra Raffai, Project Manager at Findacure, introduced the day and told us about upcoming projects, such as a peer mentoring scheme for rare disease groups, and an essay competition for medical students on the importance of fundamental diseases.

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The first speaker of the day was Grace Smith from the Directory of Social Change. She gave an engaging talk on the various governance structures voluntary organisations and charities can choose, outlining the advantages and legal implications of each.

Following Grace was Ed Owen, Chief Executive of the Cystic Fibrosis Trust. He talked about his experience managing a large patient group, and described how the charity has grown over the last fifty years. He emphasised the importance of including patients in the working of your patient group. Asking patients their opinion when developing a new project can be difficult, particularly for a big charity, but it is still crucial.

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This Findacure workshop had a slightly different structure, and was designed to be more interactive than previous workshops. We were seated at round tables, and after the first two talks a discussion session was planned. This gave everyone at the tables a chance to talk and ask questions as the speakers came around the tables. This worked really well, and discussions continued on through the coffee break.

Once everyone had eaten their fill of cookies during the break, our own Nick Sireau spoke to us about his experience managing the AKU Society. He listed five of the key challenges small patient groups like the AKU Society face, and one by one he went through the solutions to these problems. Nick highlighted the importance of building trust between staff in order to avoid personal conflict, and generate a productive work environment. He also covered more practical issues, such as how to hire the best staff and how to manage finances for a patient group.

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The final talk of the day came from Daniel Lewi, founder of the Cure and Action for Tay-Sachs (CATS) Foundation. Tay-Sachs and Sandhoff disease are terminal genetic diseases in children. A lack of an enzyme causes a build up of waste products in the brain, resulting in the loss of many functions, including movement and sight.

When Daniel discovered his child had the rare disease, Tay-Sachs, his first response was to look for information. What he discovered was disheartening. There is currently no cure with many children losing their fight as young as five. There was also no existing patient support group. To put this right, Daniel took the brave decision to set up the patient group himself.  In just a few years the charity has grown significantly, raising huge amounts of money to support families. They have also raised awareness, and are supporting researchers looking to find a treatment.

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This talk was an inspirational end to a fantastic day demonstrating the success small patient groups can achieve. Both Nick and Daniel’s presentations generated much conversation in the following discussion session. This gave everyone a chance to chat about the impact of the afternoon, and allowed patient group representatives to share their knowledge and ideas with one another. Conversations continued as delicious canapés were brought out to finish the day.

Do you know someone who might want to attend the next Findacure patient workshop? You can contact Flόra from Findacure by email at [email protected]