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What to Expect During Rare Disease Week

February 20th, 2020

General Tips and Notes

  • Talk to other advocates. Push yourself outside your comfort zone. Make connections. Keep in touch with the people you meet.
  • Rare Disease Week is a week for empathy and compassion. Narcolepsy has an established support network, and we have each other to turn to for advice and support. Some others don’t have that with their conditions. It’s possible you will be challenged about the seriousness of your illness because narcolepsy is invisible. Think about how you will describe the challenges of a life with narcolepsy to make others understand it. 
  • This is not the time nor the place for partisan politics. Please keep your political opinions to yourself when speaking with lawmakers and their staff.
  • Dress professionally, but keep an eye on the weather. You will be walking around outside.
  • We will hand out buttons to identify you as part of the Narcolepsy Network group.
  • Bring business cards if you have them. 

Main Events

Rare Disease Week is from Monday, February 24 to Saturday, February 29, but most of us will only attend the events from Tuesday, February 25-Thursday, February 27. Narcolepsy Network will send you a schedule of the events we will attend as a group as we get closer to Rare Disease Week. See RDLA’s full schedule with times and locations here.

Legislative Conference Day – Morning

  • The Legislative Conference is from 8:00-4:45 PM on Wednesday, February 26. You will learn about rare disease legislative issues and what to expect at the meetings, and will receive training on how to be an advocate.
  • Sign up for the VoterVoice app using your email to get a verification code and then EveryLife Foundation and RDLA to sign up.
  • This year there will be a Nap Nook for the first time. It will be located near the Family Room.
  • EveryLife will teach us about this year’s “asks.” They craft different asks that we advocate for as a group. For example, last year, one was for reauthorization of the newborn screening act, which was up for renewal. Another was to increase NIH funding.
  • In the morning meeting, you should receive a handout with the specifics about the times and locations of your congressional meetings. If you need to miss a meeting or are running late, contact the phone number at the bottom of the handout. Do not reach out to the office yourself.
  • At the Senate meetings, if you are from a state with many attendees, everyone may not get a chance to speak. If you are from a state with a small group you will get to briefly tell your personal story.
  • At your House rep meeting you will likely have a chance to tell your personal story.

Legislative Conference Day – Afternoon

There will be a selection of breakout sessions. If you have never been before, they will ask you to attend a session called Lobbying 101: Practicing Your Pitch. There they will give you a template for what to say to your rep, how to craft your story, and how to make your rep understand how important it is that the government support rare disease research and legislation. Professional lobbyists will teach you about how legislation is passed and how to be the most impactful in congressional meetings. Seasoned advocates will present some dos and don’ts in a mock congressional meeting skit. Before you go to Rare Disease Week, consider drafting a brief elevator pitch that tells your narcolepsy story and briefly explains it. 

Capitol Hill Meetings

  • At the Capitol Hill meetings on Thursday, February 27, it is likely you will not meet with your congressperson or senators. More frequently you will meet with a staffer. Don’t view this as a slight. Capitol Hill is run by staffers. When it comes to meetings, they are as important, if not more important, than the representatives because they do the research that goes before the lawmakers.
  • There is a lot of walking, so bring or wear comfortable shoes. Open-toed shoes and flip are not permitted in parts of the buildings. 
  • There are several entrances to the buildings, particularly the Cannon Office Building, which houses some congressional offices. Last year some attendees ran late to meetings because the security line at the front of the building was very long. Ask the security guards to point you toward another entrance if the line is long. Guards are stationed all around the buildings.
  • Between meetings make use of the Hospitality Room in the Russell Senate Building, Room 485 from 10:30 AM-4:00 PM. There are EveryLife staffers there who can offer you advice, and you’ll meet other advocates from around the country.
  • There are several Senate and House rep office buildings, and they can be a 15 to 20 minute walk apart, plus you’ll need time to pass through security. There are pedestrian tunnels that run under the Capitol that you can use to get between buildings. There are security checkpoints there too. 
  • An EveryLife staffer suggested that if we were pressed for time we should ask our congressional representative’s staff if they could get an intern to escort us to other buildings by using the Capitol “subway” – It’s a small train under the Capitol. It is only accessible to reps, their staffs, and visitors with an escort. It gets you more quickly through the checkpoints.

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Date Created: February 20th, 2020
Last Updated: February 21st, 2020

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