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Last week, almost 350 patients, including me, spent three days on Capitol Hill as an advocate for various components of healthcare reform. With all of our healthcare components currently under [...]

Rare disease is the number one cause of death in babies under a year. Currently, there are over 7000 rare diseases recorded with the number growing every year. Unfortunately, 95% of all rare [...]

If you’ve ever dealt with a long term illness, chances are high that you have had to tackle insurance coverage issues. If you are living in the United States, chances are even higher that your [...]

I recently spent a week in Washington DC representing Myasthenia Gravis, an autoimmune disease I have, for Rare Disease Week (yes, that’s a thing). I was also lobbying Congress on upcoming [...]