Welcome

Welcome! You're not alone.

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.

ARE YOU IN CRISIS?

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.

Disclaimer

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

 Madere (Dancermom)
Auburnm

Baltimorebaby

OUR GUIDELINES

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  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.
  7. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  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.

Forum

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. 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. 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. 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

Chordoma

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


Moderator
Austin left a comment for Madere (dancermom)
"Thanks! Can you make me a moderator?"
Aug 20

Moderator
Madere (dancermom) left a comment for Austin
"Welcome, and thank you for joining!"
Aug 20

Moderator
Austin is now a member of Rare Diseases - Ben's Friends Online Support Group
Aug 20

Moderator
Madere (dancermom) left a comment for Donna Crouch
"Welcome, Donna, click "Groups" above to find the Dercum gorup."
Jul 16
Donna Crouch is now a member of Rare Diseases - Ben's Friends Online Support Group
Jul 16

Moderator
Madere (dancermom) left a comment for DisneyChild
"Welcome, Disney, to this supportive community. Have you had an opportunity to meet others with your…"
Jul 13
DisneyChild is now a member of Rare Diseases - Ben's Friends Online Support Group
Jul 13

Moderator
Madere (dancermom) left a comment for Jessica Lewis
"Welcome, Jessica. You may wish to change your username to your first name only for privacy. You can…"
Jul 8
 
 
 

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