World Rare Disease Press–Videos, Editorials and More!

The Balancing Act Appearance for Lifetime’s Behind the Mystery aired this morning for World Rare Disease Day. Check out the video below:

I had the pleasure of being asked to host this month’s WEGO Health Activist Roundtable. I invited a few friends including Kevin Alexander–PKU Advocate.Kevin has made some incredible documentaries that you might want to check out. He does great work for the small but powerful PKU community!

We also had (and I was totally freaking out behind the scenes) Christin Miserandino! Name not ringing a bell? Ever hear of the spoon theory? She wrote it! The original health activist runs the famed chronic ill support site,

Last but not not least we had Kelly Crabb. Who is awesome. And whom I’m now going to twitter stalk. You can check out said twitter here. And her site here!

We talked everything from WRDD to scam doctors and treatment centers. Check out the whole conversation below:

I also wrote a Letter From the Editor for The Global Genes Blog that you can read below…

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And then I worked on a fun tweet chat with They were also neat enough to post my story on their “My Health Story” column.

Check it out below.

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