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  • #163906
    Col VI global registry

    I have recently learnt about and joined a new global registry for people with Collagen VI disorders.

    I would urge anyone with any of the conditions involving Collagen VI mutations to join. It is an exciting development and important for the future of research and potential therapies. After indicating your interest you will receive an email with a link to join up. There is a questionnaire to fill in and option to upload results of things like genetic testing, respiratory function.

    It is going coordinated by the John Walton MD research Centre in Newcastle.

    Here’s the link: Collagen 6 Global Registry

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
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