2.19.19 Rare Disease Week


Kacy and I are headed to DC in the name of ALS Awareness. We are both so, so, SO excited for all of the different events going on during Rare Disease Week. Personally I’m excited to fight for ALS from a slightly different front. Because this week isn’t devoted to any one specific disease, we are able to voice our specific asks to our legislators in concern with needs for our specific disease. Over 500 people have registered from all over the country, it’s going to be amazing.



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.


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.

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