RDLA’s Rare Disease Day

Rare Disease Legislative Advocates


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


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.



Office: (202) 803-6047 , Fax: 415-884-0562

[email protected]