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Getting Started:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group

Read More from our First-Time-User Guide.


First take a deep breath, then call the National Suicide Prevention Hotline immediately. 1-800-273-TALK
for members in the United States, or for international members, please visit http://www.suicide.org/international-suicide-hotlines.html for the right phone numbers for your region.


All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment.

Always seek the advice of your physician or qualified health provider with any questions regarding your health.

Do not disregard professional medical advice or delay seeking it because of something you read on this site.

Community Moderators




Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
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What is Rarediseases.Bensfriends.org?

Rarediseases.Benfriends.org is a place where members can create a group for those conditions that do not yet have a dedicated community. It all begins here. Start a group by clicking the Groups tab above. Invite others to join. Post discussions in your group to build your community. Please note that inactive groups will be removed after six months to make room for new groups.

Rarediseases.Bensfriends.org is powered by BensFriends.org, a network of patient support communities for rare diseases, and is run by volunteer moderators, most of whom are chronically ill patients themselves.

If you would like to volunteer to manage a Facebook page or moderate a community for your condition, please email a moderator here on the site.


getting a correct diagnosis

Started by Kathy Jennings in Recommend a Doctor, Therapist, or Clinic (Positive Review Only). Last reply by Madere (dancermom) Jun 1, 2015. 2 Replies

I need to ask a question from people experianced w/underdiagnosises. I had upper/lower jaw surgery for "tmj" in 1999, and was told everything was fine I would heal perfactly. I never healed.Let me first say that my condition began as an odd…Continue

Tags: politics, inter-faciluty, Microsomia, Hemifacial, Goldenhar

raynauds phenomenon

Started by rellieb in General. Last reply by Madere (dancermom) May 15, 2015. 1 Reply

I have cold clammy,sweaty hands & feet. I've recently seen my doctor due to my feet turning blue & lots of pain in fingers. I sometimes feel like I'm walking on ice breaks. I consistently have cold feet that can go tingling & numb. I…Continue

Want a community for your condition? Here are some things you can do

Started by Madere (dancermom) in General May 15, 2015. 0 Replies

Members, this site was conceived as a place for people who need support but who have a condition not yet covered by one of our communities. We also hope that participation on this site can help us make choices about which communities to start…Continue


Started by Christine in General. Last reply by Madere (dancermom) Nov 18, 2014. 1 Reply

Hi everyone, I recently have been diagnosed with a skull based Chordoma. Chordomas are 1 in a million. They are rare and that means there have been few studies. A panel of top surgeons met this last friday and a Dr Akagami has agreed to see me and…Continue

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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.

Latest Activity

Kathy Jennings left a comment for Tortoise
"Excuse me Tortoise: Sorry if you were not find of my story, BUT, This is a site for Goldenhare and…"
12 hours ago

Ben Munoz posted a group

Stiff Person Syndrome

Stiff Person Syndrome (SPS) is a rare disease of the nervous system. Progressively severe muscle…See More
Feb 2
Sandy Gould is now a member of Rare Diseases - Ben's Friends Online Support Group
Feb 1
AChance is now a member of Rare Diseases - Ben's Friends Online Support Group
Jan 16
Profile Iconteri, Nana and SilliLilli joined Rare Diseases - Ben's Friends Online Support Group
Jan 8
teri liked Ben Munoz's discussion Letter from Doctor to Patients with Chronic Illness
Dec 26, 2015

Ben Munoz posted a group

Aortic Rupture

Aortic rupture is the rupture or breakage of the…See More
Dec 12, 2015
Madere (dancermom) left a comment for Jennifer Holand
"Welcome, Jennifer, to this supportive community. Feel free to post a discussion. Best wishes!"
Dec 1, 2015

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