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Rare Disease Week on Capitol Hill 2019

We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2019 in Washington, DC from February 24-28, 2019!

Registration for Rare Disease Week on Capitol Hill 2019 is OPEN!

Please view the events below and register for each separately. Attendance at the Legislative Conference on February 25th is required in order to attend the Lobby Day on February 26th. Please note that if you are bringing a spouse or caregiver, you must register each person for each event they plan to attend. If you are bring a child or children, please add them to your own registration where indicated.

REGISTRATION

The week includes the following events, all of which are free for patients, caregivers and other advocates. Please click the links to register for each event you will attend.

Sunday, February 24th, 5:30 – 9:30pm: Cocktail Reception and Rare Disease Documentary Screening at the Ronald Reagan Building.

Monday, February 25th, 8:00 am – 4:45 pm: Legislative Conference at the Ronald Reagan Building. Registration for the Legislative Conference and Lobby Day is combined. Every person participating in the Legislative Conference and Lobby Day will need to register for the event including young adults.

Tuesday, February 26th, 7:00 – 8:30 am: Lobby Day Breakfast at the Washington Court Hotel.

Tuesday, February 26th, 9:00 am – 5:00 pm: Scheduled Meetings with Members of the House and Senate on Capitol Hill. Hill schedules will be distributed at the Legislative Conference on Monday.

Tuesday, February 26th, 6:00 pm: Young Adults Meet-Up at the Rare Hub.

Wednesday, February 27th, 11:30 am – 1:00 pm: Rare Disease Congressional Caucus Briefing in the Dirksen Senate Office Building.

Wednesday, February 27th, 5:00 -7:00 pm: Rare Artist Reception in the Rayburn House Office Building.

Thursday, February 28th, 8:30 am – 4:00 pm: Rare Disease Day at NIH in Bethesda, MD. Register on the NIH website.

The Rare Disease Week on Capitol Hill Legislative Conference and Lobby Day is an event established for patients and caregivers, patient advocates, and patient advocacy organizations. While representatives from industry are invited to attend the Legislative Conference, the lobby day is for patients and caregivers, patients advocates, and patient advocacy organizations only.

TRAVEL ARRANGEMENTS

Attendees need to make their own travel arrangements including hotel reservations. For convenience, a hotel room block has been reserved at the Washington Court Hotel for $229 per night from February 24 to February 28th. To make a reservation in the EveryLife Foundation hotel room block, please go the hotel website.

LEARN MORE

To find out about past Rare Disease Weeks on Capitol Hill, click the links to the right for archived materials and videos from our 2018 events.

We encourage you to watch our webinar to learn more about traveling to Rare Disease Week on Capitol Hill. The next webinar to help prepare advocates for Rare Disease Week on Capitol Hill will be on February 14th at 12 pm EST. Details to register for this webinar will be provided soon.

If you’re just finding out about Rare Disease Week and RDLA, sign up for our email list and follow our Twitter and Facebook accounts for the latest information.

What is Rare Disease Week on Capitol Hill?

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

In 2019, the week of events will start with the Rare Disease Documentary Screening and Cocktail Reception on Sunday evening.

On Monday, advocates will attend RDLA’s Legislative Conference to learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build a relationship with Members of Congress and staff. The conference is crafted to educate advocates with little to no political experience and provide useful updates to those with a history of political action. Our aim is to have every advocate leave the Legislative Conference with confidence in their ability to make a difference on Capitol Hill.

On Tuesday, keynote speakers at breakfast will prepare attendees for their meetings with Members of Congress and staff. Advocates will put what they learned at the Legislative Conference to work as they advocate for the legislation most relevant to them in Lobby Day meetings.

On Wednesday, advocates will have the opportunity to attend the Rare Disease Congressional Caucus briefing, which will convene policy experts and rare disease stakeholders to educate Congressional staff and the public on issues of importance to the rare disease community. That evening, the EveryLife Foundation will host the Rare Artist Reception with artists from around the country displaying their work and sharing their experience with rare disease with Members of Congress and staff.

All events are free for patients, caregivers and other advocates but advance registration is required for each event.  Please sign up for our email list or check this page regularly. You can also follow RDLA on Twitter and Facebook for updates.

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Webinars

The second informational webinar to prepare registrants for Rare Disease Week on Capitol Hill will take place on February 14, 2019 at 12 pm (EST). Register here.

The first informational webinar on Rare Disease Week on Capitol Hill 2019 was held on December 12, 2018. View the webinar here.

Resources

Download the 2019 Legislative Conference Agenda. Get ready for congressional meetings with sessions such as Lobbying 101, Preparing for Successful Meetings and Advocacy for Young Adults. Participate in important policy discussions on Newborn Screening Reauthorization, a rare disease burden study, NIH and FDA appropriations, and access to treatment.

Schedule of Events

Below is the schedule for Rare Disease Week on Capitol Hill 2019.

Sunday, February 24th: Rare Disease Documentary Screening and Cocktail Reception

Monday, February 25th: Legislative Conference

Tuesday, February 26th: Lobby Day Breakfast

Tuesday, February 26th: Lobby Day

Wednesday, February 27th: Rare Disease Congressional Caucus Briefing

Wednesday, February 27th: Rare Artist Reception

Thursday, February 28th: Rare Disease Day at the National Institutes of Health

Download the Rare Disease Week on Capitol Hill 2019 schedule.

Travel Stipends

The 2019 travel stipend application closed on December 14th, 2018. The travel stipend awardees for 2019 were notified by email on December 21, 2018. If you have any questions about travel stipends, please email svonfelden@everylifefoundation.org.

Please check back here for information on travel stipends for 2020.