Rare Disease Tea Party 2019

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NSA Trusee Andrea Reid-Kelly reports on her visit to the Rare Diseases Afternoon Tea Party in London on Wednesday 10th July. I had a great time! The event was organised by the British Paediatric Surveillance Unit (BPSU) to raise awareness … Continued

Families for Families Day and Activities Weekend

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Our major annual event – Families for Families Day and Activities Weekend – will take place over the weekend of 3rd to 5th April 2020 at the Whitemoor Lakes Centre near Lichfield in Staffordshire. This event provides families and individuals … Continued

Take to the Skys!

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One of our brave members Shaneen took to the sky’s in June to raise money for our organization. Shaneen raised just over £200 completing a once in a life time experience skydiving in Beccles, Suffolk. Shaneen’s husband and son Jack both … Continued

Launch of “ the first breath”

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Our chair Ian Legg attended the successful launch of Olivia Gordon’s new book “The First Breath” in London last night. The book tells how modern medicine saves lives at an early stage – the human stories and the impact on … Continued