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‘Getting a better deal for people with rare and less common cancers: what we can learn from patients


On Wednesday 10th July we launched a new report, ‘Getting a better deal for people with rare and less common cancers: what we can learn from patients’ at an event for MPs at Portcullis House, Houses of Parliament.

The report was based on a patient survey conducted in 2018. Over 670 people told us about their experiences of having a rare or less common cancer. Three patients, Roy, Liz and Steve share their stories in the report, along with Rita, carer for Sam, her son, who developed cancer as a teenager.

We hope the report highlights what difficulties patients with a rare and less common cancer can face. The difficulties and delays experienced when obtaining a diagnosis, the challenges to access treatment from specialist centres and the need for suitable support and care. But they’ve also shown us what can make a positive difference. Accurate and tailored information, access

to support from peers and care from health professionals determined to help.

To help patients, we want there to be continued focus on rare and less common cancers at a national and Cancer Alliance level. To this end, we are working with NHS England to ensure the ambition of diagnosing 75% of cancers at stage 1 and stage 2 by 2028 is achieved and sharing information and resource with Cancer Alliances.

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