Google
Trusted Resources: News & Events
Latest announcements and gatherings
2020 RARE on the Road – Virtual Event
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!
Part I: Interactive Webinar – Tuesday, June 23rd, 11:00 a.m. ET – 1:30 p.m. ET
Participate 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.
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 event has ended.
+myBinderRelated Content
-
Think Beyond What You Seehttps://www.onescdvoice.com/wp-content/u...
-
James R. Clark Memorial Sickle Cell FoundationThe James R. Clark Memorial Sickle Cell ...
-
Zulikhat Segunmaru, BSZulikhat Segunmaru was a patient navigat...
-
Ashley ValentineAshley is a Co-Founder of Sick Cells and...
-
An Introduction to the Institute for Clinical Economic Review (ICER) and Their Implications for New Sickle Cell Dise...January 16, 2020 2:00 – 3:00 PM ET W...
-
Rare Disease Day Symposium at the Quinnipiac Frank H. Netter MD School of MedicineSince 2015, the Frank H. Netter MD Schoo...
-
Sickle Cell Foundation NigeriaThe formation of the Sickle Cell Foundat...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.
Powered by
Support for this site is provided by
This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.