EPAG EpiCARE AGM 2019

Introducing Patient Advocacy across Europe

Allison’s written a short introductory piece for the latest International Bureau for Epilepsy (IBE) quartely newsletter on behalf of the European Patient Advocacy Group (EPAG) that she co-chairs which forms part of EpiCARE, the European Reference Network (ERN) for rare and complex epilepsies. Find out a little more about who’s

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Dan’s amazing challenges

This is Daniel from Wales who is currently supporting Ring20 Research and Support UK CIO: “I am trying to help raise awareness and fundraising for Ring 20 Research & Support UK. It is a charity very close to our family’s heart as my nephew James suffers from the rare Ring

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Mother and Daughter Flying High for Ring20

There might be many things on a young girls wish-list as she approaches her sixteenth birthday, but what Jacqueline Ball didn’t expect was for her daughter Sophie to say she wanted to jump out of a plane. This is exactly what Sophie wanted and her motivation was to show support for close

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A week in the life…

Many people ask me why I volunteer and why I do what I do. If I reflect on my answer to them it’s primarily because I enjoy my voluntary work and find it incredibly rewarding; there’s a lot of job satisfaction in helping another family by signposting them to information

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Mental Health Awareness Week

When you meet Torie the first thing you notice is her sheer radiance and beaming smile. You cannot help but feel uplifted by her positive energy, but like many people who live with epilepsy, her smile gives no hint to the effects of her condition on her mental health. Torie

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