BensFriends.org helps 80,000+ rare disease patients every month but until the IRS grants us 501c3 status, we can’t raise money from foundations and corporations. It costs about $2,000 a month to run the 30+ communities. In order to sustain our monthly operating costs, we called for members' donation campaign. Would you help us keep the miracle going at Ben's Friends? If you can, please visit our Donate page on this link.
Ehlers-Danlos Syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body.
Ehlers-Danlos Syndrome is caused by a defect in the synthesis of collagen, specifically mutations in the COL5A and COL3A genes. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic.
Many people asked us how to spread the word about Ben's Friends to their doctors and at support groups they go to with other patients. So we put together this simple flyer that can be printed off the Internet and emailed around. Click here to download or printout.Read more…
I found this one cute little personality test on Facebook. Let's get to know everyone and have a little fun. So, which one are you? I am #5. Feel free to comment. :-) The results . . .1. You are a generous and moral (not to confuse with moralizing) person. You always work on self-improvement. You are very ambitious and have very high standards. People might think that communicating with you is difficult, but for you, it isn't easy to be who you are. You work very hard but you are not in the…Read more…
In America, this Thursday is Thanksgiving. We spend the day thinking about what we are grateful for and also eating a lot of turkey and pie. :) I thought it would be fun to start a discussion on what we're all thankful for. I'll get it going: I'm thankful that my wonderful girlfriend, Vanessa, accepted my marriage proposal last weekend. We're all smiles here. :) I'm also thankful that this community exists and helps so many people. We started Ben's Friends (www.bensfriends.org) 6 years ago…Read more…
http://www.change.org/petitions/president-barack-obama-vice-president-joe-biden-surgeon-general-regina-benjamin-nia-clinical-director-josephine-m-egan-m-d-do-not-destroy-any-of-the-data-or-samples-from-protocol-200 I thought some of you might be interested in this petition. (I am not asking you to take a stand, just passing on the information.) The petition asks that tissue samples not be destroyed from a halted government study exploring the genetics of connective tissue disorders such as…Read more…
We’re so proud to announce the release of the Ben’s Friends iPhone App!!!
Go to the App Store and download it now. To help others locate the app easier and enjoy online support, don't forget to give the app a 5-star rate review. Strong reviews like 5-star help bumps up Ben's Friends in the Apple's search result.
In the App, you can access all 35 support communities through the site and it’s perfect for staying in touch with your friends, info and support while on the go. In our beta tests, patient reported using it in doctor office waiting rooms and right after they were given a new diagnosis. The next feature in the App will be portable doctor reviews!
You're not alone.
If your family has been affected by EDS, consider Ehlers-Danlos Syndrome Support Network your second home.
Read More from our First-Time-User Guide
All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Acute Disseminated Encephalomyelitis (ADEM)
Arteriovenous Malformation (AVM)
Atrial Septal Defect
Charcot Marie Tooth (CMT)
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Guillain-Barre Syndrome (GBS)
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Traumatic Brain Injury (TBI)
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
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