I participated in Rare Disease Week 2019

I participated in Rare Disease Week 2019

When’s the last time you did something for the first time?  I like trying new things but adulting can sometimes get in the way of that. The most spotantiety I get on a daily basis is a symptom flare up. Everything else is wash rinse repeat. So when’s the last time I did something for the first time? It was this week actually when I participated in Rare Disease Week on Capitol Hill.

What is Rare Disease Week?

Rare DIsease Week on Capitol Hill is basically a long week of events for the rare disease community to come together, connect, learn about federal legislative issues and share their stories. By community I don’t just mean patients. There were caregivers, family members, medical professionals and entire advocacy organizations present. It was organized but Rare Disease Legislative Advocates which is a program from EveryLife Foundation. I’m no expert of those so for more info click those links okurrr.

The week began on Sunday with a documentary screening of. On Monday there was a legislative conference discuss legislation currently under consideration and breakout session where we learn about advocacy. Tuesday is where the magic happened. We were given the opportunity to lobby with members of Congress and their staff, telling our stories and making our asks. Wednesday was the Rare Disease Congressional Caucus briefing and Thursday (which was actually Rare DIsease Day) was a full day at NIH.

There were also evening events such as the Young Adult Meetup with for advocates ages 16-30 to connect and on Wednesday there was a super dope Rare Artist Reception featuring artists with rare diseases.

My Experience

I dont even know how I found out about Rare Disease Week or how RDLA got my informaiton but I’m so happy that I got the information. I had orginially signed myself and my mom up. The week leading up to the event my mom wasnt able to go anymore and I considered cancelling myself. But I told myself to step outside my comfort zone and try something new.  When I was asked to be a team leader for the state of Maryland I definitely wanted to back out but again I gave myself a pep talk and pushed through. Here’s my little video recapping me week.

Even though I’m totally exhausted, I enjoyed the festivities. I’m looking forward to next year and hopefully I’ll see some zebras I know or better yet make some new friends/associates.

xoxo

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