International Niemann–Pick Disease Alliance

Updates

  1. Sanofi Genzyme: Pivotal Phase 2/3 Trial of Olipudase Alfa for Adult Patients with Acid Sphingomyelinase Deficiency to Begin in the UK

    Pivotal Phase 2/3 Trial of Olipudase Alfa for Adult Patients with Acid Sphingomyelinase Deficiency (Niemann-Pick Disease Type B) to Begin in the UK  Oxford, UK – 3 November, 2016 – Sanofi Genzyme, the specialty care global business unit of...

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  2. Jim Green: CNPDA Visit

    There is so much going on as of late; with various clinical trials beginning and/or expanding, new companies joining the fight against Niemann-Pick disease (Perlara and Novartis), and the partnership of Quinn Madeline and Baby Genes in order to create the first diagnostic carrier...

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  3. Clinical Trial Update: Orphazyme expands NPC study to three sites in the USA

    Clinical Trial Update: Orphazyme expands NPC study to three sites in the USA ( Download Here) Orphazyme’s clinical programme AIDNPC, investigating the orally administered small molecule arimoclomol as a treatment for Niemann-Pick disease type C, is close to opening...

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  4. Orphazyme: Update #11 on the AIDNPC Clinical Programme

    Update #11 on the AIDNPC Clinical Programme (arimoclomol in treatment of Niemann-Pick disease type C) You can download the article here                                    ...

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  5. “No more tiredness – I look forward to it!” Rani Voncxz

    HLN.BE REGIO The days have been tiring recently for the family from Tessenderlo, but they endured the biweekly trips to Amsterdam for the tests with a smile! Not exactly surprising when you learn that this year marks sixteen years...

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  6. The Quinn Madeline Foundation Establishes First-Ever Niemann-Pick Diagnostic Carrier Screening Programme

    You can download this press release here The Quinn Madeleine Foundation establishes first-ever Niemann-Pick diagnostic carrier screening program Aiming to eradicate fatal ASMD, The Quinn Madeleine Foundation has partnered with Baby Genes to create a diagnostic carrier screening program...

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  7. Perlara & Novartis: Join Fight Against Niemann-Pick Disease

    Perlara and Novartis join the fight against Niemann-Pick Disease: Perlara was founded in February 2014 and is the brainchild of molecular biologist Ethan Perlstein.  Perlara is a biotech startup based in the USA, whose mission is to discover personalized...

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  8. Update from the International Niemann-Pick Disease Alliance (INPDA)

      Update from the International Niemann-Pick Disease Alliance (INPDA): The INPDA has been working hard throughout the year to facilitate progress for those affected by Niemann-Pick disease, by engaging in three key projects: the International Niemann-Pick Disease Registry (INPDR),...

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  9. Orphazyme: Update #10 on the AIDNPC Clinical Programme

     PRESS RELEASE: (Download)   Update #10 on the AIDNPC clinical programme (Arimoclomol in treatment of Niemann-Pick disease type C)   Conference call with patient organizations (22 SEPTEMBER ’16) SUMMARY 002 Study: Recruitment into the 002 Interventional Study 002 Study:...

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  10. Orphazyme: Latest News Release

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