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Genetic and Rare Diseases Information Center (GARD)
Well this blog has passed the quality checks for resources linked to by GARD and is now listed here (under the Organizations tab). This might explain the slightly increased traffic I've seen here recently although Mark Zuckerberg still has nothing to lose sleep over. Still, if there is anyone out there with a probable/presumptive/possible CLIPPERS diagnosis who wants to share a bit of their story (anonymously if you like) let me know (see the FAQ) and I'll start a summary page.
Prodding and Poking
Another couple of days of prodding and poking booked in for next week at the NHNN. As far as I know this is comfy chair, "Brain MRI" and "Case Review", and no-doubt a bit of walking in a straight line and tracking various things being waved in front of my eyes. Also no doubt a medication review which could be important as on the current schedule I'll be off cortico-steroids completely in 6 weeks.
Read other articles in this series at Living With CLIPPERS.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
