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YESNYDDq
external identifier
330174
UK Government and Parliament Id
330174
e-petition UK Government and Parliament Id
330174
action
Improve care, support and treatment for children with rare diseases
background
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.
additional details
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.
created at
2020-07-02T13:53:34.653000+00:00
updated at
2020-09-15T18:31:34.000000+00:00
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