RARE on the Road 2020





Since 2017, Global Genes and the EveryLife Foundation have partnered to host RARE on the Road events around the country, developing the next generation of advocacy leaders. This year, due to the coronavirus crisis, we are hosting RARE on the Road virtually!

With feedback from the community, we designed a unique two-part virtual experience that will empower attendees to build their skill set, enhance their knowledge, engage in advocacy, and network with their local rare disease community.

These events are geared toward rare disease community members who want to tell their rare disease story, make an impact in the lives of others, and connect locally with fellow rare disease community members. Register for Part I, Part II or both!

Part I: Interactive Webinar – Tuesday, June 23rd, 11:00 a.m. ET – 1:30 p.m. ET

Participants will engage in interactive tutorials on how to tell their rare story and how to get involved in advocacy. This event is open to all rare disease community members and will feature special guest speakers, including a rare disease patient and a policy expert.

Click here to watch the recording of Part 1: Interactive Webinar


Part II: RARE Chats – Wednesday, June 24th, 11:00 a.m. ET – 12:00 p.m. ET

Meet local rare disease community members with this unique video chat experience. This session offers participants an opportunity to learn from local rare disease leaders, share ideas, and form lasting relationships with their peers.

This session will focus on issues and resources specific to California, Louisiana, Minnesota, and North Carolina, but residency is not required to register (industry members are not allowed).

We are seeking volunteer RARE Chat moderators! Please indicate interest in the registration application.

Please note: Space is limited and is first come, first served. The deadline to register for Part II: RARE Chats is June 15, or until all available spots are filled. If at that time you’d like to be added to our RARE Chats wait list,  you can send us an email at events@globalgenes.org.

Registration is now closed for the event. The recording of Part I: Interactive Webinar will be available on this website after the event.


Due to the generous support of our sponsors, participants of either event will receive a RARE Care Package, including a RARE on the Road t-shirt and other merchandise. 
Please Note: In order to receive a physical RARE Care Package, you must register by June 1. Anyone registering after June 1, will receive a digital, downloadable RARE Care Package instead. RARE Care packages can only be shipped within the U.S. International participants will receive a digital, downloadable RARE Care Package. T-shirt not included.

Thank you to our 2020 RARE on the Road sponsors.

Platinum Level Sponsors

Gold Level Sponsors


Orchard Therapeutics


Silver Level Sponsors







Bronze Level Sponsors






Recordati Rare Diseases



For information about sponsorship opportunities, please contact:

Carol Kennedy– CKennedy@everylifefoundation.org

Ted Brasfieldtbrasfield@everylifefoundation.org

Kathy O’Connor – kathyo@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.