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Trusted Resources: News & Events
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Senator Cory Booker Holds Roundtable Discussion on Sickle Cell Disease and His New Bill, The Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act
[February 28, 2018] Today is #RareDiseaseDay, which aims to raise awareness of rare diseases and their impact on the lives of patients.
As part of this initiative, I’m hosting a roundtable right now in my office to talk about sickle cell disease, and discuss my new bill, The Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act. Joining me are some incredible people including sickle cell disease representatives, medical professionals, patient advocates, and patients.
Most people don’t know that sickle cell disease is the most common inherited blood disorder and the most common genetic disorder in the US. The disease is estimated to affect as many as 100,000 Americans with as many as 3 million Americans who hold the sickle cell trait. Sickle cell disease disproportionately impacts Black and Latino populations—in fact, an estimated 90 percent of Americans with sickle cell disease are Black. More than 75 percent of adults with sickle cell disease with frequent pain do not receive their recommended treatments which is a shocking reality that demands we do more to fix this public health crisis.
My bill with Senator Tim Scott would accomplish two main objectives: Reauthorize the Sickle Cell Disease Treatment Demonstration Program; and create a new grant program to support sickle cell disease research and data collection. We need to start treating sickle cell disease for what it is: a public health crisis that demands our national attention.
people & placesSickle Cell Hope Alive FoundationSickle Cell Hope Alive Foundation (SCHAF...
people & placesShakir CannonShakir Cannon was a Health Information A...
people & placesGlobal Alliance of Sickle Cell Disease OrganizationsGlobal Alliance of Sickle Cell Disease O...
people & placesMaria Hartleben, LCSWMaria Hartleben is a licensed clinical s...
videos & visualsSickle Cell – Howard Frenchhttps://www.youtube.com/watch?v=zTHYz3Kf...
videos & visualsSickle Cell Disease: Taking Charge of Your Health Part 1 – Real-World Patient Perspectiveshttps://www.facebook.com/watch/?v=343267...
news & events2020 RARE on the Road – RaleighThe EveryLife Foundation for Rare Diseas...
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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.