Transforming the lives of those affected by MPS, Fabry and related diseases

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Events
  • MPS I Clinical trial and treatment update webinar
    17 Jun, 19:00 – 20:20
    Zoom
    Join us for our first MPS I webinar specifically on new treatments. The webinar is for patients, families, carers, and professionals interested in learning more about upcoming treatments and clinical trials.
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  • An introduction to bereaved adult sibling support
    29 Jun, 19:00 – 20:00 BST
    Zoom
    This friendly and supportive session is for adult siblings (aged 18+) whose brother or sister with MPS, Fabry or a related disease has died. Whether you’re in your 1st or 30th year of grieving – all siblings are welcome at this session.
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  • How to deal with sibling rivalry
    05 Jul, 19:30 – 20:30 BST
    Zoom
    This workshop is for parents and carers of someone with MPS, Fabry or a related disease who want to learn more about dealing with sibling rivalry.
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  • Online mindfulness course for those with a long-term condition
    Time is TBD
    Zoom
    An 8 week online mindfulness course for those with a long-term condition to help relieve pain, reduce stress and improve wellbeing.
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  • Online mindfulness course for carers or parents
    Time is TBD
    Zoom
    An 8 week online mindfulness course for carers or parents of MPS, Fabry or related disease patients.
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  • A greater understanding on visual and hearing impairment
    Time is TBD
    Zoom
    This event is postponed. Workshop run by trained sensory experts, to help understand visual and hearing impairment.
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  • Interactive sensory rich movement activities
    Time is TBD
    Zoom
    This event is postponed. Interactive workshop run by trained sensory experts, learn sensory rich movement activities to favourite music with sensory lights.
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