International Niemann–Pick Disease Alliance

Updates

  1. Launch of dedicated website to Orphazyme’s AIDNPC clinical programme

    Copenhagen, 16 September 2015. A dedicated website to AIDNPC has been launched. The site describes Orphazyme’s clinical programme to investigate the orally available small molecule arimoclomol in Niemann-Pick disease type C. The website offers to NP-C patients a tool...

    Read story
  2. Orphazyme announces update to its AIDNPC clinical programme

    Orphazyme has announced a further update to its NP-C clinical programme. Arimoclomol will require the performance of a double-blinded clinical trial with a control group. The control group means that a third of patients enrolled will receive a placebo for...

    Read story
  3. Great Divide Mountain Bike Ride for “Think Again. Think NPC”

    Felix Schleuniger of Switzerland arrived in Banff, Alberta Canada on July 18th, 2015 at 1:00pm on schedule at the Banff Springs Hotel after biking 2,500 miles from Albuquerque, New Mexico USA on the Great Divide Mountain Bike Route for...

    Read story
  4. “IMAGINE” awareness film now available with subtitles

    The “IMAGINE” short film, which follows the story of Millie, a little girl who dreams of being a dancer, yet suffers from Niemann Pick Type C, is now available with subtitles in Spanish, German, Polish and French – more to...

    Read story
  5. Think Again. Think NPC at the SSIEM Annual Symposium in Lyon, France

    Last week, our campaign to improve diagnosis of Niemann Pick Type C (NP-C) went on the road to Lyon, France, to take part in the SSIEM’s (Society for the Study of Inborn Errors of Metabolism) Annual Symposium. Representatives from...

    Read story
  6. Calporta Therapeutics is developing small molecule agonists of TRPML1 for Niemann-Pick C

    Calporta Therapeutics is developing small molecule agonists of TRPML1 for the treatment of Niemann-Pick C Disease (NPC) and other lysosomal storage diseases. Calporta’s approach is based on research from the lab of Haoxing Xu, Ph.D., at the University of...

    Read story
  7. Genzyme trial for NP-B – first paediatric patient dosed with investigational ERT

    Genzyme Initiates Phase 1/2 Clinical Trial to Evaluate Olipudase Alfa in Pediatric Patients: First patient dosed with investigational enzyme replacement therapy designed to treat the nonneurological manifestations of ASMD which characterize Niemann-Pick disease type B. Monday, June 15, 2015...

    Read story
  8. IMAGINE short film released

    “IMAGINE” follows the story of Millie, a little girl who dreams of being a dancer, yet suffers from Niemann Pick Type C; an extremely rare, incurable disease which causes neurological decline and dementia. To watch the film, visit http://www.imagineshort.com/ 17...

    Read story
  9. “Imagine” short film to be premiered this weekend 13th July

    IMAGINE follows Millie, a little girl suffering from NP-C. Imagine has  been developed in collaboration with the Hope for Hollie Foundation, NPUK and the INPDA, to raise awareness of the disease. We can’t wait to share it!

    Read story
  10. Orphazyme’s Prospective Non-therapeutic Study in Patients Diagnosed With NP-C

    Orphazyme’s ‘Observational’ study for NP-C has been registered and made available on www.clinicaltrials.gov. The trial identifier is NCT02435030. Confirmed sites and contact details are provided. https://clinicaltrials.gov/ct2/show/NCT02435030?term=arimoclomol&rank=5 You can find further information on Orphazyme’s website www.orphazyme.com  

    Read story

Join the Registry

Calling all patients and carers! We've created a global registry of all NPD patients - if you're not enrolled yet, join us now...

The Impact of NPC

The global community tell their stories...