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Pfizer Teams Up with Sickle Cell Disease Community to Launch New Online Platform

Pfizer Inc. today announced the launch of oneSCDvoice, a collaborative digital platform that provides access to resources designed to increase knowledge, emotional support, and help empower people living with sickle cell disease (SCD). Developed in collaboration with SCD patients, advocates, and medical experts, oneSCDvoice offers access to disease education from multiple sources, information about clinical trials, and includes an online social wall for community conversations. SCD is a lifelong and debilitating disorder that affects red blood cells. In SCD, blood and oxygen flow are restricted, which causes sudden, severe pain, can lead to organ damage, and can shorten life spans. SCD affects approximately 100,000 people in the United States and is therefore considered a rare disease. A number of misunderstandings about the disease exist, underscoring the need for educational resources that increase awareness and provide a forum for those affected to connect with each other.
Dec 11, 2017

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.
Feb 28, 2018