During Rare Disease Week, I have met the most amazing patients and advocates whose personal experiences have kept me motivated to continue spreading awareness not just for my disease, but…
As humanity collectively slinks into the cold, dark days of winter, we could all use something to warm us up… or at least bring a small slice of sunshine. Well,…
With the new administration, questions of coverage, the ACA and how it effects those of us affected by rare disease have been causing major concern. Today at the 2017 Legislative…
I’m a skeptic-to-enraged lunatic when it comes to outlandish health claims. I land more squarely in the “enraged” arena when said outlandish claims play on the fears of people trying…
Last night, I attended a documentary screening of "Up For Air" in Washington, DC for Rare Disease Week (or #RareDC2017, #RareDiseaseDay). It follows 53-year-old Jerry Cahill over the course of…
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