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NPUK launches campaign challenging Xenpozyme (Olipudase Alfa) decision

In March 2024, NICE announced their decision not to recommend Sanofi’s Xenpozyme (Olipudase Alfa) as a treatment for ASMD NPD. We are challenging this decision and need YOUR help! (See News/Blog)

Save the Dates for our 2024 Regional Family Days!

We are happy to announce you of this year's Regional Family Days, fostering unity and connection within our community. The very next meeting will take place on April 24th at the Ireland Radisson Blu, Dublin. You can find out more about our Regional Family Days at the Blog section of this website.

Smiley Charity Film Awards Finalists

Our short documentary, Invisible Interviews: Graham's Story was shortlisted at the Smiley Charity Film Awards 2024, a platform which significantly amplifies visibility, engagement, and awareness. For context our short has garnered 2.5k views on the official Niemann-Pick UK YouTube channel, but easily surpassed 165k views on Smiley social media platforms! Thank you to all involved.

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. It recently won Gold at the Smiley Charity Film Awards in the Longform under £100k category. Check it out on YouTube, with your support we can start a conversation surrounding newborn screening, early intervention and rare diseases!

NPUK

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: npuk.org/npuk-2020-support-fund

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