RARE on the Road 2018

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!

See you in 2019!


Saturday, June 9, 2018
8:30 AM to 4:30 PM


Saturday, June 30, 2018
8:30 AM to 4:30 PM


Saturday, July 21, 2018
8:30 AM to 4:30 PM

United Way Community
Resource Center
50 Waugh Drive
Houston, TX 77007

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Intermountain Primary
Children’s Hospital
81 N. Mario Capecchi Dr.
Salt Lake City, UT 84113

Salt Lake City Agenda

Adventure Science Center
800 Fort Negley Blvd
Nashville, TN 37203

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Travel Stipends

A limited number of $150 travel stipends are available for rare disease patients and caregivers who otherwise would not be able to attend. Applications are due one month before each event, and recipients will be notified within a week of the deadline.  

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

LEARN more about your role and where your experience and knowledge can help patients and the rare disease community at large.

RECOGNIZE the immense impact public policy can make – become aware of legislation that can vastly improve the lives of rare disease patients.

CONNECT and collaborate with other rare disease patients and organizations – gain insights from others.

DISCOVER how to reach your ideal audience, position yourself as an expert, drive traffic to your site, and get your audience engaged through social media

Due to the generous support of our sponsors, there is no cost to attend this event and breakfast, lunch, and a tour t-shirt are included!
We hope to see you on tour!

For more information, please contact:
Lisa Schilllschill@everylifefoundation.org
Amy Groveramyg@globalgenes.org

RARE on the Road 2018 was made possible through the generous support of sponsors.

Gold Level SponsorSilver Level Sponsors

Bronze Level Sponsors



Hope 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

Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization seeks to eliminate the challenges of rare disease by building awareness, educating the global community, and providing critical connections and resources that equip advocates to become activists for their disease.