Rare Disease Advocacy Gone Astray

I’ve been rare for about 14 months now, enough time to start noticing things within the space that aren’t so fabulous. I’m pretty disgusted by the actions of a few people and organizations that are treating rare disease advocacy as some sort of popularity contest.

News flash: If you’re popular with fellow rare disease advocates, you’re doing it wrong!

Continue reading

How Washington Can Change Rare Disease: Part Three

laid-offWhen I was diagnosed last May with ITP, I had no idea I was about to be tossed out of my job by my employer. When I was hospitalized, I wrongly assumed that the company I worked so hard for would back me up. So when I was laid off, I felt like my world was crumbling around me. How would I pay my bills? What about my health insurance? Could I qualify for disability? There were few real answers for me. Continue reading