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. 

This year’s legislative conference will focus on collaboration, organizing at the state and regional levels and working with stakeholders.  Attendees will have an opportunity to learn about the latest advocacy efforts on Health Care Reform implementation and Newborn Screening and will be able to meet industry and patient organization stakeholders who influence legislation.  Advocates will be able to meet with their Members of Congress and Congressional Staff to share their personal story during the Lobby Day.

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 the Draft 2014 RDLA Conference Agenda!!

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 is no cost for patient advocates to attend the Legislative Conference & Lobby Day, however the deadline to register has passed.

This year, we were able to grant 90 travel scholarships,  for a total of more than $50,000.   Unfortunately, we do not have any more funding available this year.  If you applied and have not received confirmation, please contact Julia@rareadvocates.org.

 Join us for all the other events happening in Washington, DC during Rare Disease Day WEEK!

RDLA’s 4th Annual Rare Disease Day Documentary Screening & Cocktail Reception
Featuring the new HBO Progeria documentary, Life According to Sam
Tuesday, February 25th  5:30 pm – 9:30 pm
Carnegie Institution of Science, 1530 P Street Northwest, Washington DC (near Dupont Circle)

EveryLife Foundation for Rare Diseases Workshop on FDA Regulatory Law & Policy for Patient Advocates
Best practices to work with Industry & FDA on expanded access, compassionate use & emergency IND’s
Thursday, February 27th 8:00 – 10:30 am
Embassy of Greece, 2217 Massachusetts Ave NW, Washington DC 20008

Rare Disease Congressional Caucus Briefing, Capitol Visitors Center, Room: HVC – 201
Thursday, February 27th 12:00 noon – 1:30 pm

Global Gene Projects’s Rare Disease Networking Reception
Thursday, February 27th  5:00 pm – 8:00 pm

RDD@NIH Rare Disease Day at the National Institutes of Health
Friday, February 28th: 8am – 5pm
NIH Campus, Natcher Auditorium (Building 45), Bethesda, Maryland

Review the slides from our recent webinar that gives an overview of everything you need to know before you arrive!

The Rare Disease Legislative Conference and Lobby Day has five main goals:

  1. Educate patient advocates about the legislative and appropriations process
  2. Inform Congress about rare diseases and the many different needs of the patient community
  3. Build lasting relationships with Members of Congress and their staff
  4. Ensure that the needs of rare disease patients are considered in future legislation and policy
  5. Empower patient advocates to take an active role in the democratic process

Sponsorship opportunities are available, please contact Julia@RareAdvocates.org

Thank you to our Sponsors:

Conference Sponsors