Ben's Friends Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

What is Ehlers-Danlos Syndrome?

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. 

Ben's Friends Now a Non-Profit 501(c)(3) Organization

This enables all donations to be tax deductible (starting with any made from July 2013), makes us eligible for corporate donations and matching gifts, and gives us access to grants and foundations (dramatically widening our donor pool), and provides benefits reserved for nonprofits (such as Google Ads credits).
This status will help us realize our ultimate goal - to ensure everyone affected by a rare disease has a safe place to go (our communities!) to connect with someone like them.
Thank you, Members and Moderators, for hanging in there with us and never wavering as we went through this difficult process. Now the real work can begin!
If anyone has any ties to grants, foundations, or partners who can help 501(c)(3) organizations, or if you have any past experience writing grant applications, please email us at

Mobile App and E-Book Available for Download

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.


dancermom left a comment for AngeSF
"Welcome, SF, to this supportive community. I know many stroke patients on the other networks, and I…"
Mar 31

dancermom left a comment for Kate
"We are volunteers here, Kate, but the other moderators do have EDS, as do the members, and you are…"
Mar 31
Kate left a comment for Kate
"Thanks so much dancer mom! You're so sweet. And thank you for the advice Scott. I haven't…"
Mar 30

scott o left a comment for AngeSF
"Giant welcome AngeSF! this is a great place! One tip, if you have specific questions it's best…"
Mar 30
AngeSF is now a member of Ehlers-Danlos Syndrome Online Support Group
Mar 30
Kate was featured
Mar 28

dancermom left a comment for Kate
"Welcome, Kate, to this supportive community. What a beautiful profile picture! We're glad you…"
Mar 28

scott o left a comment for Kate
"Huge welcome Kate! One tip, if you have specific questions it's best to start a New Discussion…"
Mar 28
Kate is now a member of Ehlers-Danlos Syndrome Online Support Group
Mar 28
Kate updated their profile
Mar 28
Kara Poma updated their profile
Mar 27
Ben posted a blog post
March 2014 Community Newsletter
Dear EDS Support Family and Friends, March 2014 is an exciting month for Ben’s Friends, as… See More
Mar 25

  • Moderator

    Ben's Friends Member Survey

    We are working with a non profit consulting firm called Bridgespan that helped us put this survey together to help us quantify the benefits of Ben's Friends. The hope is that we can use the data to make the communities better and to apply for grants so that we can serve more patients in disease communities that we do not currently serve. If you have a minute today, we invite you to take our short survey to help us prove that getting support in a community improves one's health and outlook.…

    Read more…
    Started by scott o 1 Reply · Reply by dancermom Mar 21

  • Moderator

    Oldest son, shoulder surgery soon, if he can educate some Wyoming doctors and stop "freaking them out"!

    I have 4 "kids" (all grown, only 2 with any signs of EDS, or so I thought!). My two youngest,20 year old daughter is here in Wisconsin going to school a short distance away, And my 24 year old son both have signs of EDS. My oldest sons live in Wyoming and are married, one with with my biological granddaughter, the oldest has adopted his wife's daughter from a previous relationship. These two have very few signs or symptoms of EDS, thank goodness! Our family is extremely close, not a day goes by…

    Read more…
    Started by Puggles 2 Replies · Reply by Michaela Mar 18
  • Hello! Symptoms question: could I have EDS?

    Hey there everyone. My name is Laura, and I've repeatedly come across reports of patients with Chiari who also have Ehlers-Danlos syndrome, and I've started to wonder if I could in fact have EDS as well. I've been struggling for the last year physically, and I've been through a gauntlet of tests and specialists and we still don't have a clear picture.I'm wondering because I have several symptoms of EDS, but not some of the more definitive ones. I don't notice velvety skin, haven't noticed slow…

    Read more…
    Started by Unwritten 6 Replies · Reply by Michaela Mar 17
  • Infographic on Disability in America

    Check out this well-researched infographic on Disability in America from the website!

    Read more…
    Started by Armando A 1 Reply · Reply by Michaela Mar 14


  • March 2014 Community Newsletter

    Dear EDS Support Family and Friends,

    March 2014 is an exciting month for Ben’s Friends, as everything seems to fall into place! But before we share the good news, we invite you to participate in a brief survey on the positive impact…

    Read more…
    • Comments: 0
    • Tags:

  • Moderator

    Working my way back!

    Hello Everyone! Dancermom's ears' must have been ringing since she reached out to check on me the same weekend I was going to check in with everyone here. So I have been doing pretty well but very very busy with school. For the many new members…
    Read more…
    • Comments: 7
    • Tags:


You're not alone.

If your family has been affected by EDS, consider Ehlers-Danlos Syndrome Support Network your second home.


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