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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.

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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.…

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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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Forum

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

Started by Julie in General. Last reply by dancermom Aug 25. 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

myotonic dystrophy

Started by rena in General Aug 18. 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

Chordoma

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

HFM

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.

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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

dancermom left a comment for lauren15s
"Welcome, Lauren, I look forward to learning from you about reflex sympathetic dystrophy. If we do…"
Friday
lauren15s is now a member of Rare Diseases - Ben's Friends Online Support Group
Friday
dancermom and 2 ruptures of 6 annies are now friends
Friday
dancermom left a comment for Dyezie
"Welcome, Dyezie, you husband may be interested in our Caregiver Support Community on Facebook.…"
Friday
vsworks posted a group
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Sleep Apnea

Open to all, but especially to people who suffer from Sleep Apnea of all kinds; central or…See More
Thursday
Scott Orn left a comment for Dyezie
"Hi Dyezie -  Huge welcome to the community! This is a great place! One tip, if you have…"
Aug 26
Dyezie is now a member of Rare Diseases - Ben's Friends Online Support Group
Aug 26
dancermom left a comment for mcr2
"Mcr, do you belong to this community? http://www.livingwithataxia.org/"
Aug 25

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Rare Diseases - Ben's Friends Online Support Group

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Thank you for your greeting. It gets very lonely out here.”

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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