How to Prepare for Success at Rare Disease Week on Capitol Hill

We are very excited to host more than 600 rare disease patients, caregivers and other advocates from across the country next week in Washington, DC.

As we discussed in a webinar earlier this month on Rare Disease Week on Capitol Hill, there are a few things you can do to prepare to ensure a productive experience and minimize last-minute stress:

  1. Visit the websites of your Representative and both Senators to learn more about them and find possible points of connection. Not sure who they are? You can find out here. While you’re there, sign-up for their newsletters so you can learn about district office hours and town halls.
  2. View the issue briefs for the legislative asks to be discussed at the Legislative Conference which are available here. You’ll have the opportunity to ask questions of the experts at the Legislative Conference.
  3. Practice your personal story. If you are in a large group of advocates in Senate meetings, you may only have 2-3 minutes so be concise. Think about how it might tie-in to your ask (such as more funding for research). If there is no treatment for your rare disease or if you use medicines off-label, you might want to mention that.
  4. Download the list of events during Rare Disease Week on Capitol Hill with locations and Metro stops. We also recommend that you print your hotel confirmation and flight/train/bus details.
  5. Print a map of the DC Metro and/or download a ride-sharing app such as Uber or Lyft.
  6. Check the weather and pack appropriately. It looks like you may need an umbrella but can leave your snow boots at home!

Safe travels, and we look forward to seeing you next week!