International Niemann–Pick Disease Alliance

Updates

  1. Open Letter for NPC Community [Bloomsbury Genetic Therapies Limited]

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  2. Cyclo Therapeutics – Phase 3 Study of NPC now Enrolling in UK

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  3. Pfrieger’s Digest – 03/2023 Edition

    “Pfrieger’s Digest” is written by Frank Pfrieger of Niemann-Pick Selbsthiifegruppe (Germany) to provide an overview of the latest advances in Niemann-Pick disease based on recent scientific publications. Frank Pfrieger is group leader at the Institute of Cellular and Integrative Neurosciences in...

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  4. Pfrieger’s Digest – 09/2022 Edition

    “Pfrieger’s Digest” is written by Frank Pfrieger of Niemann-Pick Selbsthiifegruppe (Germany) to provide an overview of the latest advances in Niemann-Pick disease based on recent scientific publications. Frank Pfrieger is group leader at the Institute of Cellular and Integrative Neurosciences in...

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  5. Azafaros Receives FDA’s IND Clearance and Fast Track Designation for Lead Asset AZ-3102

    Leiden, The Netherlands, January 5, 2023 – Azafaros B.V. today announced that it has received Investigational New Drug (IND) clearance from the United States Food and Drug Administration (FDA) to conduct a clinical Phase 2 trial for its lead...

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  6. IB1001-301 Recruitment Complete

    IntraBio Ltd. is pleased to confirm that it has completed recruitment for its Pivotal Trial, Effects of N-Acetyl-L-Leucine on Niemann-Pick disease type C (NPC): A Phase III, randomized, placebo-controlled, double-blind, crossover study (IB1001-301 – NCT05163288). Enrolment for IB1001-301 commenced...

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  7. Cyclo Therapeutics Announces Publication of Phase 1 Data for Trappsol® Cyclo™ for the Treatment of Niemann-Pick Disease Type C1 (NPC1)

    – Data published in official journal of the Society for Inherited Metabolic Disorders, Molecular Genetics and Metabolism – Published trial data show that Trappsol® Cyclo™ overcomes the NPC1 defect by removing trapped cholesterol from cells both systemically and in the...

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  8. Xenpozyme (olipudase alfa) approved by FDA as first disease-specific treatment for ASMD (non-CNS manifestations)

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  9. NNPDF GOES VIRTUAL – NNPDF Family Support & Medical Conference 2022

    Want to join the NNPDF Family Support & Medical Conference but can’t be there in person? VIRTUAL Conference registration is available! Cost is per family (includes multiple devices) and includes main sessions. Check out the agenda at t.ly/agenda2022 for all LiveStream...

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  10. Press Release: Xenpozyme® (olipudase alfa) approved by European Commission as first and only treatment for ASMD

    Xenpozyme® (olipudase alfa) approved by European Commission as first and only treatment for ASMD Paris, June 28, 2022. The European Commission (EC) has approved Xenpozyme® (olipudase alfa) as the first and only enzyme replacement therapy for the treatment of non-Central Nervous System (CNS) manifestations of...

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The Impact of NPC

The global community tell their stories...