RARE on the Road 2020

The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates. We are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you!

Registration opens February 13, 2020!

Minneapolis, MN – May 30, 2020
InterContinental Minneapolis – St. Paul Airport
5005 Glumack Drive – Terminal 1 of MSP
Minneapolis, MN 55425
Meeting Room: Passport Ballroom III

New Orleans, LA – June 27, 2020
Loyola University New Orleans – Danna Student Center
6363 St. Charles Avenue
New Orleans, LA 70118
Meeting room – Audubon Room

Raleigh, NC – TBD
Marbles Kids Museum
201 E Hargett St
Raleigh, NC 27601
Meeting room: Zanzibar A

Burlingame, CA – TBD
Hyatt Regency San Francisco Airport
1333 Old Bayshore Hwy
Burlingame, CA 94010
Meeting Room: Grand Peninsula D

Top three reasons why you should attend RARE on the Road:

LEARN how to tell your rare disease story.

RECOGNIZE how you can impact public policy and help save lives.

CONNECT with other rare disease patients and advocates.

Due to the generous support of our sponsors, breakfast, lunch and a tour t-shirt are included!
We hope to see you on tour!

Travel Stipend

In order to enable more advocates to attend, the EveryLife Foundation and Global Genes will offer a limited number of $150 travel stipends for each event. Rare disease patients and caregivers who otherwise would not be able to attend will need to apply for the stipend. Applicants will be notified of their application status 2-3 weeks prior to the date of their selected event.

The stipend application deadlines for each event are as follows:

Raleigh, North Carolina: TBD
Burlingame, California:  TBD
Minneapolis, Minnesota: May 1, 2020
New Orleans, Louisiana, May 29, 2020

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.