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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.
people & placesBukola BolarinwaBukola Bolarinwa is a lawyer, Advocate, ...
people & placesSickle Cell Disease Association-St. PetersburgAs a non-profit 501(c)3 organization, Si...
news & events‘Sickle Cell Speaks’ Campaign Raises Awareness with Aim of Eroding Stigmas, GBT and Partners SayIn partnership with community organizati...
news & eventsCurrent Advocacy Work in Sickle Cell Disease: The Global PerspectiveJoin the Global Alliance of Sickle Cell ...
people & placesHole in the Wall Gang CampThe Hole in the Wall Gang Camp was found...
Community CenterSickle Cell Aid FoundationSickle Cell Aid Foundation is a register...
people & placesModupeoluwa BabawaleMs. Modupe Babawale is a passionate warr...
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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.