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Trusted Resources: News & Events
Latest announcements and gatherings
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.
videos & visualsPreventing Strokes in Children with Sickle Cell Diseasehttps://www.youtube.com/watch?v=k6h7cb7S...
news & eventsGlobal HOPE Initiative Plans $100M Pediatric Hematology-Oncology Treatment Network in AfricaThe Bristol-Myers Squibb Foundation, Tex...
people & placesGeorge CarterGeorge Harris Carter has had personal ex...
education & researchMedicaid and CHIP Sickle Cell Disease Report, T-MSIS Analytic Files (TAF) 2017Sickle cell disease (SCD), the most prev...
videos & visualsProviding Expert Care for Pregnant Sickle Cell Patienthttps://www.youtube.com/watch?v=rTebitxq...
people & placesJohn James, OBEJohn James is the chief executive of the...
Community CenterToday’s Faces of Sickle Cell Disease: Carolyn Rowley, PhDCarolyn Rowley is a psychologist, patien...
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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.