Global Genes and EveryLife Foundation Announce First-Ever RARE on the Road – Rare Disease Leadership Tour

March 22, 2017

 Leading rare disease patient advocacy organizations Global Genes – Allies in Rare Disease and the EveryLife Foundation for Rare Diseasesare partnering to present RARE on the Road – Rare Disease Leadership Tour. This new leadership series will bring important insights and timely discussion to rare disease patients.  RARE on the Road will help educate and empower the rare disease community’s next generation of advocacy leaders by providing the tools for greater activation and engagement.


“This partnership and the vision for this program is an important example of what should be happening more often in rare disease – partnering for impact, cost efficiencies, and partnering because it is simply the right thing to do,” stated Nicole Boice, CEO of Global Genes. “We are honored to be working with EveryLife Foundation, which most importantly, has the same goals and aspirations as Global Genes- to eliminate the challenges of rare disease.” 


RARE on the Road – Rare Disease Leadership Tour is a collaborative effort with the goal to bring increasing value, insights and knowledge to patients and advocates challenged by rare disease. It is a three-stop road show, with plans to expand each year with additional regional meetings. The tour will kick-off in Atlanta, Georgia on May 13th, then travel to Kansas City, Missouri on June 5th, and conclude in Portland, Oregon on July 15th. This first-of-its-kind collaboration between Global Genes and EveryLife Foundation offers a full agenda of topics and discussions from 8:30 am – 4:30 pm at each location. The program series will provide attendees with the skills and knowledge to affect change for the rare disease community.


“Most patients don’t realize that public policy impacts the development of therapies and cures, access to those treatments, and their​ affordability​. Ensuring rare disease patients have an opportunity to, and are equipped to​, influence these life and death policy decisions is our top priority,” said Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases.


With 1 in 10 Americans affected by one of the 7,000 identified rare diseases, impacting an estimated 100 million patients and caregivers in the U.S., there is a tremendous need for coordinated support, education and outreach.  EveryLife Foundation and Global Genes will be working with patient advocates, subject matter experts and local legislators to better educate and support patients efficiently.


For more information and to register, please visit The events are free and open to the public.

Register at the following links by location:





RARE on the Road is proudly supported by Vertex Pharmaceuticals Inc. Additional sponsorship opportunities are available.




About Global Genes® – Allies in Rare Disease
Global Genes is a leading global rare disease patient advocacy organization.  The mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections and support to people and resources, and through investment in technologies that will positively impact affected patients and families.  Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.


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.

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