2025

What does good care and treatment for rare disease mean to you?

Have Your Say: Help Shape Quality Standards for Rare Disease Care RAIRDA’s Rare Disease Quality Statement Project is inviting patients, carers, healthcare professionals, policymakers, and patient organisations to take part in their second survey. This important project aims to define what high-quality, sustainable care, treatment, and management should look like for people living with rare

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The power of doctors saying ‘I believe you’ – Cambridge Research Results

Please see links to a publication on the long-term impact of misdiagnoses from Dr Mel Sloan and Prof David D’Cruz’s research team at Cambridge published on Monday which many of you contributed to. Mel, David, and the research team, which includes many patient partners and whose core ethos is to research the topics that YOU

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MSK Lived-Experience Group

We’re pleased to share an opportunity from NHSWE Musculoskeletal Strategic Network. They are launching an MSK Lived-Experience Group and are looking for individuals with experience of musculoskeletal conditions, such as arthritis or back pain, to join. To introduce the group and its benefits, they are hosting a webinar on Monday, 3rd March, 12:30-13:15 via Microsoft Teams.

MSK Lived-Experience Group Read More »

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