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!

The purpose of advocacy is to make people outside of the rare disease community aware of our struggles. We have to let everyday Americans know that chances are the person sitting next to them is rare. 1 in 10 Americans have a rare disease, the numbers are enormous. In order to see much needed legislation like 21st Century Cures happen, we have to get everyone on board. 

I personally don’t care if other advocates know about me, I don’t go out of my way to connect. Why? My advocacy targets people who can create true change for the ITP and rare communities. Advocating to someone who wants the same things I do but doesn’t have the means to make it happen is pointless. These relationships develop organically over time, as we connect walking the same path. I don’t need to spend countless hours discussing the issues of step therapy with a fellow rare disease patient. We both know it is impractical. I do need to be discussing it with law makers and healthcare providers because they are the people who need to receive the feedback.

The overall goal of rare disease advocacy is to push for meaningful change and action, starting in Washington DC, moving to each of the 50 states and down to the local level. It is critical that you align your advocacy efforts to fulfill this quest.

Don’t be blinded by glitz and glamor. Those people are only out to collect money from you and do nothing but pat themselves on the back. The reward from a successful campaign doesn’t come from someone handing you a piece of paper, it comes from changing the way our community is treated.

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