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  1. 13.09.19

    26th Annual Family Conference & Interactive Workshop on Niemann-Pick Diseases 2019 (PROGRAMME)

    We are pleased to share the programme for the upcoming 26th Annual Family Conference & 10th Interactive Workshop on Niemann-Pick Diseases. We look forward to seeing our community all together once again, if you have any issues or queries regarding this event please do not hesitate to get in touch with us by either email at: or phone on: 0191 415 06 93.

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  2. 12.09.19

    CTD Holdings to Present at 2019 Annual Conference for NPC Patients, Families, and Health Professionals in the United Kingdom

    CTD is also a proud sponsor of the NPUK Annual Family Conference & Interactive Workshop on Niemann-Pick Diseases, for the 4th year running...

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  3. 12.09.19

    ASMD Research Study Opportunity

    Evidera, a research group working on behalf of Sanofi Genzyme, is conducting a research study to understand the symptoms and impact experienced by carers of those affected by ASMD Niemann-Pick disease types B, or A/B...

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  4. 30.08.19


    Copenhagen, Denmark, August 28, 2019 – Orphazyme A/S (ticker: ORPHA.CO), a biopharmaceutical company dedicated to developing treatments for patients living with rare diseases, today announces its interim financial results for the period January 1 – June 30, 2019 and corporate highlights...

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  5. 26.07.19

    Survey Opportunity: Qualitative Analysis of Niemann-Pick Type C 5-Domain NPCCSS

    We are pleased to inform you of a study opportunity available to NPC patients and their families:
    Clinical Outcomes Solutions (COS), is a research company conducting research into Niemann-Pick type C (NPC) on behalf of a sponsor, Orphazyme A/S, a pharmaceutical company studying NPC...

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