Wegeners charity

[Peter Marsham]

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 wouldn’t hurt if one more went on the list, but I can’t seem to find anything at all. Maybe the condition is just too rare for that sort of thing, but any info would be welcome.

[me2]

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.

[Peter Marsham]

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

[Alysia]

This is the link for the donation thread:

https://www.wegeners-granulomatosis.com/forum/threads/3394-Donations?highlight=Donations


@andrew (https://www.wegeners-granulomatosis.com/forum/member.php?u=1) is doing a wonderful work here, without any funding (except from us). Thank you, andrew :wub:

[drz]

The Vasculitis Foundation also has some good educational webinars and fund raising events too. They are a good resource for us.

[Peter Marsham]

I’ll keep this link handy. Thanks for all the info everyone.

[mishb]

Hi Peter

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

Australia and New Zealand Vasculitis Society (anzvasculitis.org) (https://www.anzvasculitis.org/)

[Peter Marsham]

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