Tags » Rare Disease

Rett and Pharma …What’s the Attraction?

I often come across statements to this effect, “The pharmaceutical industry is not interested in pursuing drug development for Rett Syndrome because the disorder is rare and companies won’t make any money.” 323 more words

Monica Coenraads

Proteus Syndrome

In this condition, there is an overgrowth of different body parts, including bones, organs, skin, and blood vessels.
The parts affected show asymmetry, and are out of proportion. 133 more words


This is also called Craniofacial duplication.In this disorder, the face of the fetus is duplicated.
They have a single pair of limbs and other organs as a normal individual has, but their head is duplicated…along with their facial features i.e.

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Interesting "Jet Pack" Travels

I was wandering the newest supermarket to go up in our area yesterday.  I was perusing the grab & go/hot food sections (just to see what they had) when I heard some one ask me, “Hey, what’s the battery life on that thing?”.   1,067 more words


Regularly Scheduled Programming

Take Our Poll

Hey everyone. I’ve sort of had a rough week and an even harder weekend. I’m 90% sure I’m going through a new major flare that is causing trouble with my ability to stay awake, walk, stand or pretty much anything you need muscles or energy to do. 87 more words


Like/Dislike Relationship With Facebook

I know this seems a pretty random post, but it’s not.  I tend to vacillate back-and-forth on this subject, often. I’ve hesitated writing about it because I’m sure it will open a can of worms. 1,074 more words


Now For the Boring Bureaucracy

I spoke with my social worker at my transplant center today.  He was very helpful with clarifying a few questions I needed to ask about things I had mulled over recently, including if & when I should start to apply for federal disability.   540 more words