Patient Engagement


We are excited to announce that registration for Global Genes LIVE! is now open! We cannot wait to engage with you virtually, both on live platforms, as well as through intimate 1:1 networking sessions.

Discover inspiring stories of hope and challenging educational insights, with all the fun of our in-person event sprinkled throughout. 

Sessions like Rare Disease Watch Parties, in partnership with The Disorder Channel, showcase the unique stories of members in our rare disease communities.

Don’t miss out on any of our exciting social media challenges before and during the event by checking out @GlobalGenes on social media, and be sure to visit  the Global Genes (un)Summit Store for your swag bag.

Register Now!


$5,000 Scholarship Opportunity

Have you heard?
The EveryLife Foundation for Rare Diseases established the #RAREis Scholarship Fund – to enrich the lives of adults living with rare diseases by providing support for their educational pursuits. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted to up to 32 recipients for the Spring 2021 semester.

Who can apply?
Anyone over the age of 17 who are residents of the United States and have been diagnosed by a physician as having any form of rare disease regardless of treatment status. (Undiagnosed applicants may apply with a completed Diagnosis Verification Form by a physician).

What kind of classes can you take?
The scholarship may be applied to a course of any subject matter; including vocational-technical/trade school, undergraduate, graduate study and single classes verified under an accredited program.

What do you need to submit?
– Your most recent transcripts.
– A Diagnosis Verification Form.
– Essay (2,000 characters maximum): 
“What do you aspire to be and do in the rare disease community and how will this scholarship help you achieve those goals?” 

Tip: While academic performance, work experience, participation in community activities and financial need is considered, the essay is weighted heavily in the award selection process.
Pursue Your Dreams through the #RAREis Scholarship Fund

Deadline for application is August 28th, 2020 @ 3:00 p.m CST
Learn more and Apply!

This program is made possible thanks to the generous support of Horizon Therapeutics plc


EveryLife Foundation For Rare Diseases
1012 14th Street, NW, Suite 500 | Washington, District of Columbia 20005
202-697-7273 | info@everylifefoundation.org

Rare Disease Featured in The New York Times


%d bloggers like this: