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Blog Posts

Partial complex seizures/predilection for aneurysms

Posted by Dandrus on February 18, 2015 at 8:22am 0 Comments

When I was diagnosed with a "lesion" on my brain, I'd been having complex partial seizures for about a year before. The neurologist did not know what was causing them, but treated them with the drug Carbamazepine, which stopped the seizures in their… Continue

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

ClinicalTrials.gov Studies

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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

dancermom commented on Ben Munoz's group Raynaud's Disorder
"At long last, we have a Facebook page for…"
Apr 20

dancermom joined Ben Munoz's group

Raynaud's Disorder

Raynaud's is a rare disorder that affects the arteries. Arteries are blood vessels that carry blood…See More
Apr 20
Scott Orn left a comment for MultipleMom
"So glad you found us MultipleMom! One tip, if you have specific questions it's best to start a…"
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"Big welcome Mea! One tip, if you have specific questions it's best to start a New Discussion…"
Apr 11
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dancermom left a comment for Triahie
"Welcome, Traihie, you are welcome to form a group for this condition under "Groups" at…"
Mar 30
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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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