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Thread: Wegeners charity

  1. #1
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    Default Wegeners charity

    Hi everybody!

    (hi Dr Nick!)

    I was wondering if anybody might have information on charities or financial support for Wegs or vasculitis in general. I already give some spare change to various charities, it wouldnít hurt if one more went on the list, but I canít seem to find anything at all. Maybe the condition is just too rare for that sort of thing, but any info would be welcome.

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  3. #2
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    Default Re: Wegeners charity

    Hopefully someone else will chime in but I know who comes do mind for me right off the top and that is Andrew who runs this site for us. There is a 'donation' thread here and once in a while some of us kick in to help keep the lights on. This message board and the people I get to talk with is as important to me as any other of my medical support.

    The Vasculitis Foundation is another good place for patient support and I know they also fund some research projects and special events for us Vasculitis patients.
    I was much more active with them many years ago. Before the internet even. I have attended confrences put on by them that hosted medical specialists and allowed patients to meet and network. They work with some of the top doctors in the field.

    I lived with this illness for over 15 years without talking to a single other person with Wegener's. It was the work of the VF founder Marilyn Sampson that made it possible. In fact the first person I ever talked to was HER over the phone many many years ago.

    Thanks Peter you have jogged my brain enough to realize that I myself to need to touch base with them and see what is going on in recent times. I'm a bit out of touch.

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    Default Re: Wegeners charity

    Thanks for that, Iíll get in touch with Andrew and get some details as a start. If you do think of anything else, let me know.

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    Default Re: Wegeners charity

    This is the link for the donation thread:

    https://www.wegeners-granulomatosis....ight=Donations


    @andrew is doing a wonderful work here, without any funding (except from us). Thank you, andrew
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Wegeners charity

    The Vasculitis Foundation also has some good educational webinars and fund raising events too. They are a good resource for us.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Wegeners charity

    Iíll keep this link handy. Thanks for all the info everyone.

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    Default Re: Wegeners charity

    Hi Peter

    Australia also have their own Vasculitis society. Refer to the link below

    Australia and New Zealand Vasculitis Society (anzvasculitis.org)
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Default Re: Wegeners charity

    Thanks Michelle, amazing thing is I never even found this on a normal search. Guess the search algorithm is geared toward selling shoes.

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