Rare Disease Legislative Conference & Lobby Day 2014
Join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day – Week, February 25th – 27th 2014.
Tuesday, February 25th Legislative Conference
National Press Club, 529 14th Street NW, Washington, DC (Near the White House & Metro Center)
8:15 am - 9:00 am Registration & Breakfast
9:00 am – 3:30 pm General Session, lunch included
3:30 pm – 4:30 pm SoapBox Meeting Schedule overview
Click Here to watch the video presentations from last year’s Legislative Conference
Wednesday, February 26th Lobby Day
7:00 am -8:30 am Lobby Training Breakfast
Top of the Hill, Reserve Officers Association, One Constitution Avenue, NE, Washington DC (Metro stations are conveniently located both 2 blocks south and north of the venue at Capitol South (Blue and Orange Lines) and Union Station (Red Line), walking distance to the House & Senate meetings.)
9:00 am – 5 pm Capitol Hill Meetings with Members of Congress & Congressional Staff
Thursday, February 27th State Delegation Hill Meetings ** New this year**
9:00 am – 5 pm This is an optional day for advocates who wish to drop by Congressional Offices and attend meetings on behalf of advocates who are too sick or unable to come to DC. We will be collecting stories from Rare Disease Patients across the US to hand deliver to their Member of Congress. Our goal is to let every Member of Congress know that there are Rare Disease Patients living in their districts who deserve Congress’s attention. There will also be a Congressional Caucus Briefing during the day that patient advocates can attend, registration is separate for the Briefing.
There is no cost for patient advocates to attend the Legislative Conference & Lobby Day, click to REGISTER!
Need financial assistance to help cover your travel costs? Click here to apply for a $600 travel scholarship. Financial support is only available for those outside of the DC area. One per family member. US residents only. Scholarships recipients will be announced on January 24th.
Hotel Room Block:
Embassy Row Hotel, 2015 Massachusetts Ave, NW, Washington DC (Dupont Circle, on the Red Metro line)
$149/night single $169/night double + 14% DC Tax Click here to book your room or Call (202) 939-4208 & ask for the EveryLife Foundation Room Block. Complimentary internet in guest rooms; complimentary breakfast. There are a limited number of rooms available at the discounted rate. Discounted rates expire on Monday, February 3rd.
If you can’t join us in DC, please stay tuned for ways to share your personal story with Congress.
Sponsorship opportunities are available, please contact Julia@RareAdvocates.org
The Rare Disease Legislative Conference and Lobby Day has five main goals:
- Educate patient advocates about the legislative and appropriations process
- Inform Congress about rare diseases and the many different needs of the patient community
- Build lasting relationships with Members of Congress and their staff
- Ensure that the needs of rare disease patients are considered in future legislation and policy
- Empower patient advocates to take an active role in the democratic process
Thank you to our Sponsors: