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The Government has published their new Action Plan for England to mark this #RareDiseaseDay - the SHCA is pleased to see new commitments made for diagnosis and health inequalities for rare conditions as two key areas we are campaigning on🧬Click below to read the new Plan in full

The SHCA and Genetic Alliance UK have partnered to publish a manifesto for rare diseases – we are calling on the next government to act decisively to prioritise the needs of people living with a rare or complex condition across the UK Read our manifesto here⬇️ shca.info/wp-content/upl…

Massively important findings 👇

We contributed to this report, highlighting inadequate NHS mental health support for people living with muscle wasting conditions. We back SHCA's call for better care. Need support now? 📞0800 652 6352 (Mon-Thur 10am-2pm). Browse our support groups: rb.gy/orkrej

We are publishing a new report on the important issue of reducing delays to a rare disease diagnosis, analysing progress made over the past year across the UK. Our message is clear – when it comes to diagnosis, we cannot afford to wait⌛️ shca.info/wp-content/upl…

The SHCA and Genetic Alliance UK are calling for the UK Rare Diseases Framework to be refreshed, renewed and recharged after 2026 🇬🇧 Check out the findings of our report: shca.info/wp-content/upl…

The Government recently announced that NHS England will be reintegrated into Department of Health and Social Care. We know that the announcement raised a number of questions and concerns. Together with SHCA, Genetic Alliance UK have written to Wes Streeting seeking clarity around next steps. 1/2 👇