International Niemann–Pick Disease Alliance

Updates

  1. IntraBio: IB1001-301 (International Recruitment)

    IntraBio Inc. Pivotal Trial Announcement: IB1001-301, “Effects of N-Acetyl-L-Leucine on Niemann-Pick disease type C (NPC): A Phase III, randomized, placebo-controlled, double-blind, crossover study.” We are pleased to share the news that recruitment to IntraBio’s Pivotal trial: IB1001-301 “Effects of...

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  2. Mandos NPC1 Community Newsletter, May 2022

    May 2022 To The NPC1 Community, Happy May. It’s been a little while since we provided our last communication back in February and we’re excited to share three important updates on our progress. We have completed our first meeting...

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  3. TransportNPC: Scott Fine, CEO of Cyclo Therapeutics

    Dear Members of the NPC Community, My name is Scott Fine and I have been CEO of Cyclo Therapeutics since 2015. Our company is enrolling a Phase 3 study of a potential treatment for NPC. The study, called “TransportNPC”,...

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  4. CHMP recommends approval of Xenpozyme® (olipudase alfa), the first and only treatment for ASMD

     Recommendation based on positive results from two clinical trials in which Xenpozyme provided improvement across multiple non-CNS clinical manifestations of ASMD in pediatric and adult patients  ASMD is a rare, progressive, and potentially life-threatening disease with no...

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  5. Orphazyme A/S under In-Court-Restructuring to sell substantially all of its assets and business activities to KemPharm, Inc.

    Orphazyme A/S in restructuring Company announcement No. 24/2022 Inside information www.orphazyme.com Company Registration No. 32266355 KemPharm to acquire Orphazyme assets, including those relating to the development and approval of arimoclomol, for a total of USD 12.8 million in cash and...

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  6. Pfrieger’s Digest – 06/2022 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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  7. Webinar: The impacts of olipudase alfa on pediatric patients with ASMD and their families

    We are pleased to be able to share the following collaborative webinar entitled The impacts of olipudase alfa on pediatric patients with ASMD and their families: Results of an international survey,  which was hosted by the International Niemann-Pick Disease Alliance (INPDA),...

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  8. Xenpozyme® (olipudase alfa) approved in Japan, first and only approved therapy indicated to treat acid sphingomyelinase deficiency

    DOWNLOAD THE PDF VERSION Xenpozyme® (olipudase alfa) approved in Japan, first and only approved therapy indicated to treat acid sphingomyelinase deficiency Xenpozyme represents first Sanofi therapy to be approved under the SAKIGAKE ‘fast-track’ designation Approval based on positive results from two separate clinical trials...

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  9. Orphazyme Update – March 2022

    We are writing to inform you that the CT-ORZY-NPC-002 trial activities as well as ongoing early-access and named-patient programs for arimoclomol in NPC will continue for the current time. As you may have seen, Orphazyme participated in an ad-hoc...

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  10. Azafaros Announces FDA Grant of Orphan Drug Designation for AZ-3102 in the Treatment of Niemann-Pick Disease

    – Second Orphan Drug Designation Supports Azafaros’ Strategy to Develop AZ-3102 as a Disease Modifying Treatment in a Range of Severe Rare Inherited Metabolic Disorders – Leiden, The Netherlands, March 24, 2022 – Azafaros B.V. today announced that the...

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