Making the Patient Voice Heard

This week was Rare Disease Week, with Rare Disease Day observed on February 28. On Thursday, I shared a post from a couple years ago about what Rare Disease Day means to me: making the Patient Voice heard.

It just so happens that Rare Disease Day is observed (in non-leap years) on another day of significance to me: my birthday. I’ll be honest, now that I’m in my 30s, my birthday holds a lot less significance for me. I’m past the excitement of getting older, but not yet dreading the turn of another year; I’m solidly at the point in my life where I’m not really young and I’m not really old and my actual age matters so little that I occasionally have to do the math to confirm how old I really am.

This year, though — this year is a little different. I’m a person who invests weight in certain numbers (I once very nearly had a panic attack because Z was so careless as to park on the 5th floor of the parking garage on our way to a very commonplace minor procedure) and this year I’m turning 34 — one of my luckiest numbers of all.

Since Z turns 34 in the same year, I wanted to make this a “year of 34” for us — a year in which we take charge of our lives and start saying yes to things again after plugging along in survival mode for so long. That the launch date of my “year of 34” falls on Rare Disease Day turned out to be serendipitous, because it also coincides with this year’s Digestive Disease National Coalition Public Policy Forum — an event that brings together patients, clinicians, and others from the Digestive Disease community to learn more about healthcare policy and speak with lawmakers to advocate for better healthcare.

So today, as Rare Disease Week wraps up, I’m headed to Washington, D.C., to make the patient voice heard.

Stay tuned for more….

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