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Press Release

Global Genes and EveryLife Foundation Announce 2nd Annual RARE on the Road - Rare Disease Leadership Tour

Global Genes
Posted on: 26 Apr 18

ALISO VIEJO, Calif., April 26, 2018 /PRNewswire-USNewswire/ -- Leading rare disease patient advocacy organizations Global Genes – Allies in Rare Disease and the EveryLife Foundation for Rare Diseases are pleased to announce the 2nd annual RARE on the Road – Rare Disease Leadership Tour. The three-stop roadshow will kick off in Houston, Texas on June 9th, travel to Salt Lake City, Utah on June 30th, and conclude in Nashville, Tennessee on July 21st. Following a successful first year, RARE on the Road will educate and empower the next generation of advocacy leaders by providing the tools for greater activation and engagement.

"We are honored to once again partner with EveryLife Foundation- who has the same goals and aspirations as Global Genes- to provide critical education and insights to the rare disease community, while collaborating in an interactive and engaging environment," stated Nicole Boice, CEO of Global Genes. "Following last year's event, it was extremely evident that the attendees were seeking as much knowledge as possible to better advocate for their affiliated rare disease. This is why this program is so important. We are providing the tools for patients and caregivers, so they can make an impact."

RARE on the Road is a collective effort between Global Genes and EveryLife Foundation uniting to build and activate the rare disease community at a local level. The tri-city event increases value, insights, and knowledge for patients and caregivers challenged by rare disease. RARE on the Road offers a full agenda of topics and discussions from 8:30 a.m. – 4:30 p.m. at each location.

The three-stop roadshow will help participants recognize the immense impact of public policy and identify where their experience and knowledge can support the rare disease community. Attendees will connect with other rare disease patients and organizations, and discover how to engage through social media. Expert speakers from the Mayo Clinic Social Media Network will teach advocates how to reach a targeted audience, position themselves as an expert, and drive traffic to websites.

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 continually work with patient advocates, field experts, and local legislators to better educate and support patients efficiently with programs like RARE on the Road.

"Collaboration is key to bringing treatments to patients," said Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases. "The challenges faced by individual rare diseases are the same for all rare diseases. Only by working together can we bring the policy change that is needed to save lives.  We are again very proud to be co-hosting RARE on the Road with Global Genes as we hope to create a model for collaboration to help grow and empower the rare disease patient community together."

For more information or to register, visit RARE on the Road 2018 is supported by Gold Sponsor, Sanofi Genzyme, and Silver Sponsors, Avexis and Horizon Pharma. Additional sponsorship opportunities are available.

About Global Genes® – Allies in Rare Disease
Global Genes is a leading rare disease patient advocacy organization whose mission is to connect, empower, and inspire the rare disease community.

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.  

Editor's Details

Mike Wood

Last updated on: 26/04/2018

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