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Christine Jopling at the NPUK Annual Family Conference

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We aim to provide up-to-date, comprehensive and practical information and advice for those affected by Niemann-Pick diseases as well as information and resources specifically for health, education and social care professionals. The information we develop covers a broad range of topics to enable you to tailor information for your needs. Please feel free to share any of the resources available. If you have any questions or need further information then please contact us at any time.

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Latest news

11.05.21

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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06.05.21

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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