The GI Protocol is open!

First, let me apologize for the quick and dirty post. (See last entry – grin!) I really want to blog at length about this, but I’m under some big bad deadline pressure right now. It will have to wait until the weekend.

But, I do want to get the word out that the GI protocol is open. This is exciting news as it’s the first treatment protocol at NIH devoted to the bowel issues of Hermansky-Pudlak Syndrome.

The tough part about it, however, is that they are only accepting 10 patients and those 10 patients have to meet a pretty long list of requirements, plus not have any of the long list of exclusionary criteria. That means that not everyone I’d like to see get into this protocol is going to be able to do it.

If you do have bowel issues related to HPS, and you are interested in going to NIH for treatment, please contact the HPS Network and check it out. It can’t hurt to find out if you’d meet the criteria, and even if you don’t, it’s helpful for us to know you’re out there, you’re having issues etc. This protocol, like the lung protocols, is only the beginning. We need your information to keep pushing the research forward.

Comments

Kathryn said…

I look forward to hearing more about this...

9:10 PM

Ratner's Cheesecake

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Living on the frontlines

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