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We are seeking your experiences of living with chronic illness and we want to hear your ideas for changing perceptions and the policies that affect us. Our research and consultation is conducted via online focus groups and online surveys. This way we hope to reach as many people within the community as possible, including those who are housebound or bedbound.

Our aim is to capture a diverse range of health conditions – especially rare diseases – from a broad range of contributors. Whether you are a card-carrying “spoonie”, you hate the term, or you’ve never heard of it before, if your daily life is significantly impacted by fatigue, pain or energy limitation, then this project is for you.

Subscribe to our mailing list for information about our online discussion forum and for opportunities to take part in surveys and to contribute a guest blog to our ongoing series.

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