Are You Undiagnosed? Share Your Story

It took 19 years for doctors to finally diagnose me with a rare immune deficiency disease. The total number of undiagnosed patients is unknown but considered to be vast. To provide some perspective on this epidemic, consider that it takes an average of 7.6 years in the United States to uncover a rare disease diagnosis. Worldwide there…

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#GivingTuesday: Here’s What You Can Do For Me

Working at Global Genes changed my perspective from day one. Rare disease can victimize you, make you feel helpless and hopeless. If doctors didn’t know how to treat me–who did? If pharmaceutical companies hadn’t produced a drug for me–who knew if they ever would? But Global Genes opened the curtain to a world that only…

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But…Like…What Do You DO For a Living?

I’m recovering from throwing the season’s wildest four-year-old poodle’s birthday party. It’s been a hard week trying to meet his expectations and surpass his hopes–but after twelve orange tennis balls, a granola cake, and the help of a few drunk friends: we made the impossible possible.   Okay, maybe the six foot high scene setters…

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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…

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Getting Personal at Global Genes

One of the main goals when I signed on board with Global Genes was to give a platform to the many voices of knowledgeable and weathered patients, parents and advocates in the rare and  genetic disease community. I wanted to be able to have writers share real stories, tips, and advice. I’m so happy to say that…

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