Youth Advocacy during Rare Disease Week on Capitol Hill

 As our Foundation continues to build its youth advocacy programming, we are pleased to offer a dedicated youth advocacy track for our 2018 Legislative Conference.  This programming track echoes our belief that it is important for young adults to have their own voice when advocating for issues affecting the rare disease community, and aims to grow that voice to build confidence, develop political leadership skills and raise awareness.

The age range for our youth advocacy program is 13-25 yrs old.  We strongly encourage event participants to be within this age range, but all are welcome.

Young adult events during RDWCH 2018

Monday, February 26th, 2018

Legislative Conference
Ronald Reagan Building and International Trade Center, Atrium Ballroom
1300 Pennsylvania Ave NW, Washington, DC 20004
 Young Adults Track (2 sessions)

• Track C: Advocacy for Young Adults: Your Voice Matters

First, learn a little bit about how our government works. Then, meet and hear from some rare disease young adults who have been making a mark on Capitol Hill by telling their stories.

• Track C: Advocacy for Young Adults: Practice Meetings with Congressional Staff

Young adults can practice telling their stories to Congressional staffers. Attendees can get some tips and tricks for successful meetings on the Hill from those who know best.

Tuesday, February 27th, 2018

Young Adults Meet-Up (a debrief of your experiences on the Hill that day)
Songbyrd Music House and Record Café
2475 18 St NW, Washington, DC 20009

Wednesday, February 28th, 2018

Rare Artist Reception
Russell Senate Office Building Room 325
2 Constitution Ave NE, Washington, DC 20002

Award recipients from the 2017 Rare Artist contest will speak at the Rare Artist Reception, taking place on Wednesday, February 28th in Room 325 of the Russell Senate Office Building.  Awardees from the Rare Artist contest’s Teen category will be present to speak about their work and the impact of rare disease on their lives.  This is a chance to network with other young adults and view the artwork of the rare disease community.  For more information on the reception and to register, click here.

For those who have already registered and are looking for other ways to prepare for Rare Disease Week on Capitol Hill, here are some tips:

  • Tune into our webinar on Thursday, Feb. 15th. To register click here.
  • Watch this video on “Tips on how to dress for Lobby Day”. You will hear directly from two of our speakers for the young adults track, Shira Strongin and Taylor Kane.
  • If you need a letter from the EveryLife Foundation to excuse absence from school, please email our youth advocacy program director, Lindsey Cundiff at
  • If you are interested in posting on social media throughout Rare Disease Week on Capitol Hill, keep these handles in mind.

Any other questions/concerns about the Youth Advocacy during Rare Disease Week on Capitol Hill, please email Lindsey Cundiff at

Social Media Info flyer design: Shira Strongin.