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!
" To Know the Joy of Giving"
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
© 2012 Created by BensFriends.org
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