Rare on the Road

Rare on the Road

RARE on the Road is a rare disease leadership series hosted by Global Genes and the EveryLife Foundation for Rare Diseases, providing critical education and insight into the rare disease community. Due to the COVID-19 pandemic, this year’s event will be virtual.

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.

Be sure to register to attend both RARE on the Road 2020 events.

Part I: Interactive Webinar

Tuesday, June 23, 2020

11:00 a.m. – 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.

Register Now

Part II: RARE Chats

Wednesday, June 24, 2020

11:00 a.m. – Noon 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. Residency is not required to register but this session will focus on issues and resources specific to:

  • California
  • Louisiana
  • Minnesota
  • North Carolina

*Industry members are not permitted to attend.

Space is limited for Part II: RARE Chats, and seats are first come, first served.  Once all available spots are filled, registration for Part II will close.  If at that time you’d like to be added to our RARE Chats wait list, you may send us an email at events@globalgenes.org.

Register Now



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