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!
More details including information on registration will be available soon.
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!
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
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
Silver 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
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.