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!

See you in 2019!

Boston, MA
March 30, 2019
Broad Institute, 415 Main Street Cambridge, MA 02142
Birmingham, AL
May 4, 2019
Location: TBD
Denver, CO
May 18, 2019
History Colorado Center, 1200 N Broadway, Denver, CO 80203
Sioux Falls, SD
July 13, 2019
Location TBD

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. 

Travel Stipends

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
Kanoe Fragas – kanoef@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

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.