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Welcoming our new NPUK Co-Chairs

We would love for you to join with us in warmly welcoming our two new Co-Chairs, Helen Carter (left) and Joella Melville, who take over the reigns from Will Evans, who will remain as a dedicated member of the Board of Trustees. Helen and Joella have supported our charity for many years and are passionate about creating further positive change for all of those we advocate on behalf of. Welcome both, we look forward to seeing what you will achieve!

Robert Webb in "A Rare Find"

We have helped develop a comedy awareness short film, "A Rare Find", as part of The Newborn Screening Collaborative. The short features Jack Robertson (pictured), Chantelle & Cora Lily Taggart, and narration from Peep Show's Robert Webb. Check it out on YouTube, with your support we can start a conversation surrounding newborn screening, early intervention and rare diseases!

NPUK Series: Invisible Interviews

Invisible Interviews is a documentary short film series that follows four families affected by Niemann- Pick disease, providing a deeper and more personal insight into some of the issues and challenges highlighted in our short film Invisible Manners. All interviews are now available to watch via our Facebook page and YouTube channel...


NPUK Support Fund

Despite life slowly returning to "normal" in recent times, the NPUK Support Fund is still in place to help individuals and families within the NPUK Community. The aim of this limited fund is to assist those experiencing hardship or unexpected expense as a result of the Coronavirus pandemic, as this could impact physical or mental well-being. Find out more information at:

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2024 Regional Family Days: Save the Dates!

We're pleased to announce this year's Regional Family Days, designed to bring our community together for support and solidarity. Here's the schedule...

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