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”

posted in: Events | 0

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

Check out Benji!

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Check out Benji, with his mum Stephanie at Coleby primary school in Lincolnshire who supported a fabulous little fundraiser last week. Well done guys – and thank you

For Mark Legg

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For Mark Legg: A truly inspirational and brave young man with Noonan’s syndrome who last week lost his fight with increasing complicated health issues. Please help us to now raise money in his honour so the charity for which his … Continued

What is gene therapy?

posted in: Research | 0

Around 80% of rare diseases have a genetic cause. Many of these diseases have no good treatment options, but gene therapy might help. So what is gene therapy, and how does it work? Raremark have produced an article we think … Continued

“Miles for Noonan Smiles Success”

posted in: Fundraising | 0

To celebrate Dr Noonan reaching her 90th on 28th October families all over the country took part in individually organised small fundraising walks. Alison Good and over 20 of her fellow walkers completed 28 miles in the Southampton area in … Continued

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