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Petition Improve care, support and treatment for children with rare diseases

3.5 million people in the UK will be affected by a rare disease at some point in their lives. 95% of rare diseases have no treatment and 50% of those affected are children; 1 in 3 do not live to see their 5th birthday. These children can wait years for a diagnosis and some just never receive one.

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Care for children with rare diseases is suffering hugely due to COVID19. The current UK Strategy for Rare Diseases ends this year and work to provide a new and modernised framework has stalled. Sign this petition to urge Government to deliver a comprehensive, modern and measurable rare disease framework before the end of 2020, so the most vulnerable children in our society can get the improvements to care and support they so desperately need. Sign to make their lives better and to show you care.

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Government will respond

Government responds to all petitions that get more than 10,000 signatures

Waiting for 22 days for a government response

At 100,000 signatures...

At 100,000 signatures, this petition will be considered for debate in Parliament

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