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If your family has been affected by Rare Diseases, consider Ben's Friends Rare Diseases your second home.


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Ben's Friends Patient Communities - support group for patients affected by rare diseases

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Does Your Rare Disease Pain Have You Considering Suicide?

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 information on where to call.

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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.


Blog Posts

Let's start at the beginning.

Posted by Anencephaly Angels on September 11, 2014 at 11:47am 0 Comments

On December 28, 2012, my son, Tom Forest Lovett, III became an Anencephaly Angel. From my personal loss, I hope to help others in similar situations and by doing so I have created Team Anencephaly Angels. My life has changed in many ways over the… Continue

A Doctor Explains How Conventional Medicine Got Autoimmune Diseases All Wrong

Posted by Armando Abrero on April 30, 2014 at 9:38am 0 Comments

Another one of those finds I'd like to share with everyone here.…


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Started by Christine in General. Last reply by 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

myotonic dystrophy

Started by rena in General. Last reply by christina green Sep 2, 2014. 1 Reply

HiI was wondering if anybody else had Myotonic Dystrophy as I am not really sure about it. My real Dad had this disease tho I wasn't in contact he died nearly a year ago. I got a copy of his death certificate and saw he had DM. My mum suggested I…Continue

Is there anyone out there with a cerebellar disorder, ataxia, shrinking cereballar gland?

Started by Julie in General. Last reply by dancermom Aug 25, 2014. 1 Reply

I am starting to think that my sister and I are the only ones in the world going through this.  I guess it is really rare.Anyone?Continue


Started by Kathy Jennings in General. Last reply by dancermom Jul 27, 2014. 1 Reply

I'm just starting out, trying to find freinds who went throught the only HMO ((Besides UC) in CA accepting TMJ surgical patients still suffering. This is a serious matter. I really need help.

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What is Rarediseases.Bensfriends.org?

Rarediseases.Benfriends.org serves as an "incubator" for new communities of all diseases that do not yet have a dedicated community.  Initially, a group for each rare disease is created and when the group gets larger, a dedicated community will be developed.

Rarediseases.Bensfriends.org is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with rare disease.

If you would like to work with us on expanding one of our groups to be a fuller community, please email us at info@bensfriends.org

Latest Activity

Ben Munoz posted groups
dancermom left a comment for Deborah Jay
"Hello, Deborah and welcome. Mast cell and POTS -- sounds like it could be Ehlers Danlos Syndome,…"
Deborah Jay is now a member of Rare Diseases - Ben's Friends Online Support Group
Scott Orn left a comment for FCMMARK
"Big welcome!"
Scott Orn left a comment for Theodore
"big welcome!"
ISTwarlordess posted photos
dancermom left a comment for Theodore
"Welcome, Theodore, we have two communities that you may be interested in. See the Chiari and EDS…"
dancermom left a comment for FCMMARK
"Hi, Mark, I don't know if we have a group for this condition yet, but please check…"

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Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.



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