Press Releases

Global Genes® and EveryLife Foundation for Rare Diseases Expand RARE on the Road

March 12, 2019

ALISO VIEJO, Calif.March 12, 2019 /PRNewswire/ — Leading rare disease patient advocacy organizations, Global Genes and the EveryLife Foundation for Rare Diseases, are pleased to announce the third annual RARE on the Road – Rare Disease Leadership Tour. The four-stop roadshow will kick off in Boston on March 30, travel to Birmingham, Ala. on May 4Denver on May 18, and conclude in Sioux Falls, S.D. on July 13. Following two successful years, RARE on the Road aims to educate and empower the next generation of advocacy leaders by providing the knowledge and tools to better serve their rare disease community.

RARE on the Road is a collective effort to build and activate the rare disease community at a local level. The multi-city event increases value, insights, and knowledge for rare disease patients, caregivers and advocates. Participants will learn how to tell their story, connect with others in the community, and navigate the complex world of rare disease. Each event is from 8:30 a.m. – 4:30 p.m. and includes an agenda with multiple educational sessions and expert speakers, including presenters from the Mayo Clinic Social Media Network who will teach advocates how to reach a targeted audience, position themselves as an expert and drive website traffic.

“Connecting, empowering and inspiring members of the rare disease community is what our partnership with the EveryLife Foundation for Rare Diseases has enabled,” stated Angie Rowe, interim executive director, Global Genes. “Expanding the RARE on the Road program to reach more community members was an easy decision when looking at the success and passion generated since its inception.”

Globally, 350 million people are living with a rare disease. There is a tremendous need for coordinated support, education, collaboration and experience sharing for people affected by rare diseases.

“We are pleased to collaborate with Global Genes once again,” said Julia Jenkins, executive director of the EveryLife Foundation for Rare Diseases. “RARE on the Road has been successful, because it reaches out to rare disease patients in their own backyard, making it easier for them to learn how to make their voices heard to policy makers and Members of Congress. We hope to build on this success and continue to unite the rare disease community.”

For more information or to register, visit RARE on the Road 2019 is supported by Platinum Sponsors, Avexis, Horizon Pharma, Mallinckrodt Pharmaceuticals, and Gold Sponsors, Biogen. Additional sponsorship opportunities are available.

About Global Genes  
Global Genes is a 501(c)(3) nonprofit organization on a mission to connect, empower and inspire the rare disease community. We provide hope for more than 350 million people affected by rare disease around the globe. To date, we’ve educated 6 million people in 100 countries about rare disease, equipped 30,000 patients and advocates with tools and resources, and provided $400,000 in support for innovative patient impact programs. This is just the beginning of what we can achieve together. Visit to get involved today.

About EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy.