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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

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.…


Community Newsletter

Posted by Ben Munoz on March 4, 2014 at 12:00am 0 Comments

Dear RareDiseases Family and Friends,

We're very happy to announce that we were just approved as an official nonprofit by the IRS!!
This means that we are eligible for corporate…

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5. Specific doctor or hospital names mentioned in a negative context, for legal reasons.    
Specific doctor or hospital names in a positive context are welcome.
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Thanks for your cooperation.

Community Moderators





myotonic dystrophy

Started by rena in General on Monday. 0 Replies

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


Started by Christine in General Aug 5. 0 Replies

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


Started by Kathy Jennings in General. Last reply by dancermom Jul 27. 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.

Support Ben's Friends Through Amazon Smile for Free!

Started by Scott Orn in General Jun 10. 0 Replies

Dear Ben's Friends Community Members,Amazon is running a new promotion for Amazon Smile,…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.

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

Scott Orn left a comment for Julie
"Big welcome Julie! One tip, if you have specific questions it's best to start a New Discussion…"
1 hour ago
Profile IconJulie and Ryan Jones joined Rare Diseases - Ben's Friends Online Support Group
1 hour ago
Scott Orn left a comment for Ryan Jones
"hi Ryan - big welcome. One tip, if you have specific questions it's best to start a New…"
1 hour ago
rena posted a discussion

myotonic dystrophy

HiI was wondering if anybody else had Myotonic Dystrophy as I am not really sure about it. My real…See More
Scott Orn left a comment for Amandy
"Hi Amandy -  Huge welcome to the community! This is a great place! One tip, if you have…"
Amandy is now a member of Rare Diseases - Ben's Friends Online Support Group

Ben Munoz posted a group

Common variable immunodeficiency (CVID)

CVID is the most commonly diagnosed primary immunodeficiency.It is characterized by…See More
dancermom left a comment for rena
"welcome, Rana, to this supportive community. Feel free to open a discussion to introduce yourself…"

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Rare Diseases - Ben's Friends Online Support Group

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Rare Diseases - Ben’s Friends Online Support Group

What is Best of Ben's Friends?

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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