Support groups/events near NJ

General
1

I am 28 with a spinal avm. Feel very alone in my journey. Is anyone aware of any groups that meet around the NJ area? Thank you!

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2

i live in PA and grew up in NJ! i have a pelvic avm with 15 surgeries. id be happy to speak with you.

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3

Hi Mike - my guess is this is such a rare condition it might be tough to find a local support group. Many of us here are always available for direct conversation or - whatever form of support we can provide.

Mike

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4

Hi! I live in north Jersey. In February of this year I had a Uterine AVF as a result of a second trimester miscarriage. I have never heard of support groups in this area but would love to hear about it if you find one. It’s been a lonely road figuring out my future health/fertility journey

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5

Across other social platforms, I have heard the same thing. I am going to work to start a support group if I cannot find one for those in the area. I will post again if I find/start my own

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6

We have had get-togethers in England for AVMs in London, Birmingham and Nottingham, as far as I remember. Since this is a rare condition, you tend not to find many people in the same city but it is perfectly feasible to arrange meetings, including through this forum.

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7

We do actually have an older conversation about meeting up in NJ. See here:

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