Rare Disease Advocates to Gather in Washington, Are You Coming?

January 27, 2014

Are you ready to join RDLA and 200 rare disease advocates to rock Washington, DC this year?!

Of course you are! Strap on your jeans and head to their annual Legislative Conference & Lobby Day during Rare Disease Day (Week) this February 25 – 27, 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.

There is no cost for patient advocates to attend this event, click below to register:


Here’s what last year’s attendees had to say:

“You put together a top notch program. I have been an advocate in the childhood cancer cause since 2008 and that includes 8 advocacy days on the Hill, and this trip was the most educational and most rewarding.”

–   R. Whan, Director, Caleb’s Crusade Against Childhood Cancer

“The conference was great! I had a lot of info to take away. I really appreciated the feedback and behind-the-scene tips from the legislative aids. . . This could really be the group, RDLA, that could be a game changer.”

–   S. Bozarth, Board of Directors, National MPS Society

“Well done and high praise … Our week went so smoothly thanks to your advanced and detailed planning. We learned a lot.”

–  L. Greathouse, Histiocytosis Association Advocate

If you are unable to join us in Washington DC, but want to make sure Congress hear’s your story, we at Global Genes are collecting patient stories that fellow patient advocates will hand deliver to your Members of Congress. Please click here to ensure Congress knows what issues are most important to you! Submission Deadline: February 12, 2014

For those wanting to join us in DC, there are travel scholarships available for advocates in the following states: AL, AK, AR, AZ, DE, HI, ID, KS, KY, IA, LA, ME, MS, MO, MT, ND, NH, NM, OK, SC, SD, UT. Click here to apply for a $600 travel scholarship. One per family member. US residents only.

Hotel Room Block: Dupont Circle, on the Red Metro line:
Embassy Row Hotel, 2015 Massachusetts Ave, NW, Washington DC
$179/night + 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, and discounted rates expire on Monday, February 3rd.

Learn more about the Legislative Conference and Lobby Day and see all the events happening in Washington, DC during Rare Disease Day WEEK!

Sponsorship opportunities are available, please contact [email protected]

Thank you to our Sponsors:


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