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Meet ups/groups for people with same condition

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  • May 10, 2019 at 10:57 am #177617
    Meet ups/groups for people with same condition

    There used to be a page where you could be put in touch with people with the same condition as you, does anyone know if that service is still available?

    Thank you.

    Cogniumnose
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    May 10, 2019 at 1:12 pm #177628
    Reply To: Meet ups/groups for people with same condition

    There are no such pages available at the moment, although there are many Face thingy groups and the like out there. There is also the possibility of just writing a post indicating your type of MD in the heading and asking folk to message you. Certainly worth a try.
    Cat may well pop up here and offer more in depth advice as she is a wiz with that sort of knowledge.

    Mike

    So many love songs, so little love.

    embayweather embayweather
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    May 10, 2019 at 2:11 pm #177629
    Reply To: Meet ups/groups for people with same condition

    Thank you Mike.

    Cogniumnose
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    May 12, 2019 at 9:32 pm #177696
    Reply To: Meet ups/groups for people with same condition

    hi

    Link below is for MDUK peer support. I no longer seems to show phone number but if you call the main helpline they may be able to link you with group in your area.

    https://oldsite.musculardystrophyuk.org/get-the-right-care-and-support/people-and-places-to-help-you/someone-to-talk-to/peer-support-for-you/

    https://oldsite.musculardystrophyuk.org/get-the-right-care-and-support/people-and-places-to-help-you/

    As mike says there is a few Facebook groups.

    Breathe with MD – for respiratory issues
    Living with MD
    woman with MD
    Pathfinders – for Duchene MD

    MDUK Trailblazers- a group for under 30s.

    and a variety of condition specific like my own. Which is a CMD group and most specifically rigid Spine SEPn1

    Whats your Type of MD?
    Roughly where are you in UK?

    Cat
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    May 13, 2019 at 12:38 pm #177719
    Reply To: Meet ups/groups for people with same condition

    Thanks so much for all the info. Can I pm you type and where I am?

    Cogniumnose
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    May 13, 2019 at 9:09 pm #177731
    Reply To: Meet ups/groups for people with same condition

    certainly. I have sent you a Pm

    Cat
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    Joined: 20/09/2010
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