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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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  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
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  8. No email addresses or phone numbers on the forum, for your security.
  9. Religious content must be restricted to the prayer Group.
  10. No politics, please.

Thanks for your cooperation.


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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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Latest Activity

Modsupport left a comment for Okradlak
"Hello and welcome Okradlak to Ben's Friends Rare Diseases Community. Please feel welcome to…"
Jul 6
Okradlak is now a member of Rare Diseases - Ben's Friends Online Support Group
Jul 6
AlyssaN is now a member of Rare Diseases - Ben's Friends Online Support Group
Jun 13

Modsupport left a comment for Porfiria Faria
"Hello Porfiria Faria welcome to Ben's Friends Rare Diseases support group. Please feel welcome…"
Apr 29
Porfiria Faria is now a member of Rare Diseases - Ben's Friends Online Support Group
Apr 29
1inamillion2xs left a comment for Modsupport
"Thank you, JulesG"
Apr 24
1inamillion2xs left a comment for Modsupport
"Hi JulesG - Thank you for directing me to the fibromyalgia group. Member pending. I have filled out…"
Apr 24

Modsupport left a comment for 1inamillion2xs
"1inamillion2xs, we're pleased to have you here too but there is next to no daily activity on…"
Apr 22

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