Inside a Rare Disease Clinical Trial – #HunterSyndromeLive

Posted Sunday February 22, 2015 by Melissa

Inside a Rare Disease Clinical Trial – #HunterSyndromeLive

HunterSyndromeLiveSince 2011, once a year, Case Hogan travels to Chapel Hill, NC for an annual clinical trial visit. It is 11 days of travel, physical testing, cognitive testing, infusions, procedures under anesthesia, intermittent fun activities (read: bribery), trial drug dosing, pharmacokinetic studies (read: blood draws for 36 hours), and finally collapsing at the hotel.

This year, the trip happens to fall over World Rare Disease Day on February 28, 2015, a day where we raise awareness and try to give a glipse into the lives of those facing rare diseases.

Many people have asked us over the years about this long annual trip. What’s it like? How does Case handle it? How do we convince him to do all this stuff? How do I, his mom, keep from going insane?

Well this year, we’re going to answer that. Live.

From February 23, 2015 to March 5, 2015, I will be live blogging our trip, right here, in honor of World Rare Disease Day.

Bookmark this page and follow our journey down the rabbit hole of a rare disease clinical trial.

Share it on social media with the hashtag #HunterSyndromeLive. Ask questions.

It will be real. The good… the bad… the hope… and the heartache.


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