RARE on the Road 2019

The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates. We are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you!

Boston, MA – March 30, 2019
Broad Institute
415 Main Street
Cambridge, MA 02142


Birmingham, AL – May 4, 2019
Children’s of Alabama
1600 6th Ave South
Children’s Harbor Building
Bradley Conference Room, 4th Floor
Birmingham, AL 35233


Denver, CO – May 18, 2019
History Colorado Center
MDC Terrace Room
1200 N Broadway
Denver, CO 80203
Parking meters and surface parking lots are available in the blocks surrounding the History of Colorado Center. Covered parking is available a block away at the Cultural Complex Garage. Enter from 12th Avenue between Broadway and Acoma. Parking is NOT available in the covered lot right next to the museum. Learn more about accessibility.


Sioux Falls, SD – July 13, 2019
The Dakota Room
Sanford Research Center
2301 E 60th Street North
Sioux Falls, SD 57104
There is ample free parking at the facility


Top four reasons why you should attend RARE on the Road:

LEARN how to tell your rare disease story.

RECOGNIZE how you can impact public policy and help save lives.

CONNECT with other rare disease patients and advocates.

DISCOVER how to get engaged on social media. Featuring Mayo Clinic social media experts!

View the Agenda

Travel Stipends

In order to enable more advocates to attend, the EveryLife Foundation and Global Genes will offer a limited number of $150 travel stipends for each event. Rare disease patients and caregivers who otherwise would not be able to attend will need to apply for the stipend. Applicants will be notified of their application status one month prior to the date of their selected event.

  • The Stipend Application deadline for Boston, Massachusetts is Friday, March 8, 2019
  • The Stipend Application deadline for Birmingham, Alabama is Thursday, April 4, 2019
  • The Stipend Application deadline for Denver, Colorado is Thursday, April 18, 2019
  • The Stipend Application deadline for Sioux Falls, South Dakota is Friday, June 14, 2019

Apply Here

Due to the generous support of our sponsors, breakfast, lunch and a tour t-shirt are included!
We hope to see you on tour!

Thank you to our 2019 RARE on the Road sponsors.

Platinum Level Sponsors

Gold Level  Sponsors

Silver Level  Sponsors


Bronze Level  Sponsors

For information about sponsorship opportunities, please contact:

Carol Kennedy– CKennedy@everylifefoundation.org

Kathy O’Connor – kathyo@globalgenes.org
Seth Fritts sethf@globalgenes.org

About the EveryLife Foundation for Rare Diseases

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.

About Global Genes

At Global Genes®, we believe that together we can do more to tackle the challenges of rare disease. We educate, equip, and empower the global community with tools and resources to influence change. We connect rare disease patients, advocates and rare disease experts to help eliminate the challenges of rare disease.