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Promoting awareness, pioneering research and providing support and information for those affected by Gaucher disease.

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Email: ga@gaucher.org.uk

In the News

  • The National Collaborative Study for Lysosomal Storage Disorders (NCS-LSD)

    6 November 2012

    In 2005, the Peninsula Medical School, in collaboration with the Specialist Treatment Centres for Lysosomal Storage Disorders in England, proposed to examine the effectiveness and associated costs of Enzyme Replacement Therapies for the treatment …

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  • Scottish Medicines Consortium approval of VPRIV

    19 October 2012

    Shire Human Genetics applied to the Scottish Medicines Consortium (SMC) for approval of VPRIV. The SMC approached The Gauchers Association to provide information to be considered alongside Shire's submission. We are delighted to inform you …

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  • Patient Advocacy Leadership award from Genzyme

    19 October 2012

    The Association is pleased to announce they have been successful in achieving a Patient Advocacy Leadership award from Genzyme. This two year project entitled ‘Empowering Young Type III GD patients to shape the future’ will expand on …

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  • London Marathon 2013

    17 September 2012

    The Gauchers Association is pleased to announce a further five Golden Bond places for the 2013 London Marathon.  If post London 2012 has inspired you and you would like to support the Association by taking part please contact Sarah on …

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  • Transfer of high cost drugs to NICE risks fragmentation of care of rare diseases

    28 August 2012

    In an ongoing strategy to raise the profile of the Secretary of State for Health, through the Health and Social Care Act 2012, plans to abolish AGNSS and transfer the commissioning of the LSD service to the NHS Commissioning Board. Clinicians …

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  • Future NHS Funding for Gaucher Disease

    28 August 2012

    The Future of the Advisory Group for national Specialised Services (AGNSS)

    Future NHS Funding for Gaucher Disease and other Lysosomal Storage Disorders (LSDs) is unclear from April 2013 following the Secretary of State for Health, through the …

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  • Shire's VPRIV

    6 August 2012

    At the recent EWGGD meeting in Paris, Shire announced the results of a head to head trial between VPRIV and Cerazyme and the effect that each had on Gaucher related bone disease. A copy of the full press release is below.  Whilst the results …

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  • FDA approves new orphan drug to treat a form of Gaucher disease

    9 May 2012

    The U.S. Food and Drug Administration yesterday approved Elelyso (taliglucerase alfa) for long-term enzyme replacement therapy to treat a form of Gaucher disease, a rare genetic disorder.
     
    Elelyso is an injection that replaces the …

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  • Jeremy Manuel "After 21 years"

    21 March 2012

    I write to let you know that at the most recent Annual General Meeting of the UK Gauchers Association I stood down as its’ Chairman after more than twenty years’ service. My successor, who many of you will know, is Dan Brown. Dan has …

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  • Shire Announces European Approval of Manufacturing Facility for VPRIV

    24 February 2012

    European Medicines Agency Approval Adds Significant Capacity for the Manufacture of Shire’s Enzyme Replacement Therapies 
     
    Shire plc, the global specialty biopharmaceutical company, announced today that the European Medicines …

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