upcoming events

  • Mon
    06
    Jul
    2020
    Mon
    13
    Jul
    2020

    Metabol!c Support UK

    https://www.metabolicsupportuk.org/events/

  • Thu
    16
    Jul
    2020
    London

    MPS Society

    Superhero in the City is London's iconic 5k Superhero Run. Launching for the first time on 16 July 2020 at 6.55pm. This is the only running event where you'll run past some of the most iconic locations in London or the world, dressed as a superhero of your choice!

    https://www.mpssociety.org.uk/run

  • Fri
    17
    Jul
    2020
    Royal Manchester Children's Hospital, Oxford Rd, Manchester M13 9WL, UK

    MPS Society

    Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.

    https://www.mpssociety.org.uk/eventsandclinics

  • Fri
    17
    Jul
    2020
    Birmingham Children's Hospital, Steelhouse Ln, Birmingham B4 6NH, UK

    MPS Society

    Clinics allow individuals affected by MPS, Fabry and or a related disease to see a specialist consultant and, where possible, other medical professionals on the same day. This reduces the need to attend a number of separate appointments. Clinics also enable individuals and families to meet with one another as well as with members of the support and advocacy team who also attend the clinics.

    https://www.mpssociety.org.uk/eventsandclinics

  • Wed
    22
    Jul
    2020
    Sun
    26
    Jul
    2020
    Holiday Valley Resort, Ellicottville, NY

    Hunter’s Hope

    This annual multidisciplinary workshop brings together over 60 of the world’s leading experts in Leukodystrophies and newborn screening to discuss advances in medical care and research for these devastating diseases.

    https://www.huntershope.org/family-care/family-medical-symposium/


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Sam Buck, VWM

“Until February 2013, our 2-year-old son Sam was completely normal child, no problems with his pregnancy or birth, he met every milestone, and overall was…
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