Glossopharyngeal Neuralgia (GPN) - Online Support Group

We are patients living with glossopharyngeal neuralgia, here for your support.

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.


It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called AVMSurvivors.org. We realized we were helping a lot of people so we started many more. Today we run 30 online support groups and are growing rapidly, thanks to the wonderful volunteer moderators that help manage the communities.


Find out more about Ben’s Friends at www.BensFriends.org and watch our 60 second YouTube Video at http://youtu.be/YBeRFnJkleU


I’m also at these sites and love new friends!
Twitter: https://twitter.com/scottorn & Facebook: http://www.facebook.com/scottgableorn

 

If you would like to help us spread the word about patient support, please post about us on Facebook, Twitter and Blogs. Pasting in the URL, or Internet Address, of this community will make it easier for others to find us and get the support they need!

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Blog Posts

May 2012 LivingwithGPN Community Newsletter

Posted by Ben Munoz on May 26, 2012 at 6:42am 0 Comments

Dear Friends and Family of LivingWithGPN,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities…

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No Eagles Syndrome

Posted by Denise on May 23, 2012 at 11:05pm 0 Comments

My styloid process and tonsils have been removed and no relief from the pain.  It is actually worse. Unfortunately, it doesn't seem as though it was Eagles Syndrome.  Back to my GPN diagnosis.  UGH!  I am starting a stronger pain medicine this…

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