Rare Disease Week 2026 Frequently Asked Questions

Rare Disease Week is the opportunity for the rare disease community to come together in Washington D.C. Rare Disease Week consists of many events including a Rare Disease Congressional Caucus Briefing, Legislative Conference, meetings with Members of Congress, and more. It is a great opportunity to educate your Members of Congress on the issues that are most important to the rare community.

View the agenda here.

• Smart casual attire is appropriate for the documentary screening, Legislative Conference and all YARR events.
• Business/business casual is appropriate for the Rare Artist reception, caucus briefing and meetings with Members of Congress

Information on arranging your travel to and stay in Washington, DC for the week’s events can be found on the RARE Foundation website, here. At the bottom of the webpage, you can also find information on accessibility resources for travel to and around Washington, DC.

Light appetizers and drinks will be available during the Rare Disease Documentary Screening and Reception.

Breakfast, lunch, a snack, and all day beverages will be available during the Legislative Conference, and lunch will be available during the Rare Disease Congressional Caucus Briefing.  Additionally, light appetizers and drinks will available at the Rare Artist Reception.

Check back here for more details on the menu items available as we get closer to the event.

All other meals not listed will be on your own.

When you meet with your Members of Congress, attendees will start by introducing themselves then attendees will share their rare disease stories. After stories are shared, attendees will make their “asks.” An “ask” is what you are asking your Member of Congress to do. For example, if you are asking your Member of Congress to join the Rare Disease Congressional Caucus, that is your “ask”. Please note that everyone in the meetings with Senators may not have time to introduce themselves, share their story or make an ask. This will depend on the number of advocates in each meeting, as each meeting is usually 15 to 30 minutes long. The House meetings are usually smaller. If you would like to learn more about how to prepare for your meetings, please join us for the Rare Disease Week training webinars!

You will be able to view one-pagers on each of the official legislative asks under the “resource library” tab as soon as they become available.

Yes, you are welcome to make an ask outside of the official legislative asks. If you choose to do so, you must create a one-pager to leave behind or email to the Member’s office. This is important for the office to refer back to when they are presenting your request to the Member. You can learn more about how to create your own one-pager here.

You can contact us at rarediseaseweek@rareadvocates.org.

Yes, we are offering a few different opportunities to prepare for your meetings with your Members of Congress! Each opportunity is listed below and will be held via Zoom. No trainings will be in-person. You will need to register for the training webinars separately from the Rare Disease Week event registration. Registration links will be sent as we get closer to the event.

• Rare Disease Week Deep Dive Policy Webinar: February 6th, 12:00pm-1:00pm ET
  • This webinar will cover everything you need to know for Rare Disease Week including summaries on the official asks, what to expect during your meetings, what you should do to prepare for your meetings, how to follow up after your meetings and more!
• Share Your Story with Policymakers Webinar: February 11th, 12:00pm-1:00pm ET
  • Share Your Story with Policymakers is an opportunity to practice sharing your rare disease story. You will have the opportunity to practice your “pitch” and receive feedback from coaches.
• Rare Disease Week Team Coordinator Training Webinar: February 12th, 12:00pm-1:00pm ET
  • This training webinar is for assigned Team Coordinators only. If you have accepted the Team Coordinator position for your meetings, you will receive a link to this webinar. Registration is not required.
• Rare Disease Week Office Hours: February 7th (12-1pm ET), February 14th (12-1pm ET)
  • The office hours are an opportunity for you to pop into a Zoom meeting and ask the RDLA team any questions you may have leading up to Rare Disease Week! You are welcome to join the office hour at any time within the hour and you are not required to stay the entire hour. Registration is not required. A link will be sent to all registrants.

Each advocate has two options for meetings. The first option is to meet with both of their U.S Senators and their Member of the U.S House of Representatives. The second option is to meet with both of their U.S Senators, their Member of the U.S House of Representatives, and other legislators from their state. When registering, you will have the option to select which option you prefer.

Rare Disease Week is an opportunity for individuals to meet with their own Representative or Senators.

You will receive an email from Advocacy Associates with a link to your meeting schedule no later than February 19. This is where you will be able to view what meetings you are assigned to. The platform also includes the time of each of your meetings, the attendees for each meeting and their contact information, the call-in details for your meetings and notes from past meetings with each Member’s office. If you have not received your meeting schedule from Advocacy Associates, please email us at rarediseaseweek@rareadvocates.org.

Yes, but they must register individually. If it is past the registration deadline, please email rarediseaseweek@rareadvocates.org with your registration request.

A team coordinator has been assigned by RDLA to help coordinate advocates in a meeting beforehand. Team Coordinators are specifically assigned for meetings with five or more people in the meeting. The coordinator may email everyone before the meeting so everyone can introduce themselves and let the group know which “ask” they plan to make in the meeting. The coordinator may assign everyone an order to introduce themselves and help decide who tells their stories during the meeting especially if there are a lot of attendees for the meeting. Even if you do not have an assigned team coordinator, we still encourage all advocates to plan the logistics of your meetings together! You can find each attendee’s email address on the Advocacy Associates platform.

If you are unable to attend any of the meetings listed on your schedule, please email rarediseaseweek@rareadvocates.org. Please do not contact the Congressional office directly. Many meetings will have more than one person attending, so in these cases, we will be telling the office to expect one less attendee. 

If you are unable to attend any of your meetings, please let us know as soon as possible. No shows for meetings negatively reflect on the rare disease community and RDLA.

Advocacy Associates works diligently to schedule all meetings, but confirmation of each meeting depends on the individual offices. Meetings are usually not cancelled, but if they are, we work to reschedule the meetings for the advocates. If your meeting time is listed as “TBD,” it is because the individual office has not confirmed the time yet. As soon as they confirm, your meeting schedule will be updated. Please check the Advocacy Associates Platform to see if any scheduling updates have been made.

If you are a Spanish speaker, please let us know before your meetings that you will require a translator and we will work to provide a translator for your meeting. All training webinars associated with Rare Disease Week will be equipped with Spanish closed captioning, as well as other languages.

Please note that your Member of Congress may not be in your meeting with their office. If the Member of Congress is unable to attend, you will be meeting with their health staffer. The health staffer is a member of the Congressperson’s office who handles all health policy topics. These staffers are a fantastic resource and will share your asks and stories with the Member.

The email address for each staffer will be located on the Advocacy Associates platform. To access their email, click on the individual meeting. Their email will be listed at the top, left-hand side of the screen behind their name.

The meeting feedback form is located on the Advocacy Associates platform. To access the meeting feedback form, click on each individual meeting, then click the blue “meeting report form” button on the left-hand side of the screen.

Please reach out to our team at rarediseaseweek@rareadvocates.org for additional questions.