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Go Make Memories, NPUK, Lleyton Coombes (age 13, NP-C)

NPUK Short Film: Go Make Memories

We are proud of our collaborative short film Go Make Memories (2019), which has helped push for further awareness of Niemann-Pick disease and gained many awards in the process. Please take a moment to watch and share on our YouTube channel @NPUK

NPUK Annual Family Conference & Interactive Workshop

Digital Annual Family Conference & Interactive Workshop

Our Digital Annual Family Conference & Interactive Workshop can now be accessed "on-demand" on the WorkCast platform for those wishing to watch and/or re-watch our milestone event online! If you have any issues with accessing the site please do get in touch with us by email at: or phone on: 0191 415 06 93


NPUK Support Fund

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, which threatens to impact their physical or mental well-being. Find out more information at:

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Latest news


Cyclo Therapeutics Appoints Lori McKenna Gorski as Global Head of Patient Advocacy

GAINESVILLE, FL–(Businesswire)–May 11, 2021–Cyclo Therapeutics, Inc. (Nasdaq: CYTH) (“Cyclo Therapeutics” or the “Company”), a clinical stage biotechnology company dedicated to developing life-changing medicines through science and innovation for patients and families suffering from diseases, announced today it has appointed Lori McKenna Gorski as Global Head of Patient Advocacy...

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ARDEnt publishes its findings on how the fragile rare disease ecosystem was disproportionately impacted by the COVID-19 pandemic

Today Action for Rare Disease Empowerment (ARDEnt) has published its findings andrecommendations in the report ‘Making The Unseen Seen: Rare disease and lessons learned from the COVID-19 pandemic’...

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