Chronicle Champions Awards

We were delighted to be awarded ‘Champion Family’ in the Chronicle Champions awards, with our campaign to make Brinuera available on the NHS being commended.

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APPG Meeting

Gail discusses her experience of an ADDP Rare, Genetic and Undiagnosed Conditions meeting in Parliament, which both she and Matthew attended.

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ITV: Brineura Funding

We met ITV correspondent Rachel Bullock just after we found out that NHS England will fund treatment for Batten Disease.

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Great North Run 2019

32 of us took part in the Great North Run to raise money for The Nicole & Jessica Rich Foundation – it was a day we won’t forget!

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Visit to Westminster

We joined our wonderful local MP, Catherine McKinnell, to meet with Secretary of State for Health and Social Care, Matt Hancock in Westminster.

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