SCW Video: Iron Overload And Fatigue
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FDA Public Meeting – Patient Perspectives on the Impact of Rare Diseases
Registration Open: FDA Public Meeting – Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities On Rare Disease Day, FDA announced the Agency will host a public meeting – “Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities” on April 29, 2019. The purpose of the meeting is to obtain patients’ and caregivers’ perspectives on the impacts
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SC and CBS 60 Minutes
On Sunday, March 10 at 7:00 p.m. ET, NIH Director Dr. Francis Collins and NIH senior investigator Dr. John Tisdale will be part of a CBS 60 Minutes segment on the search for better treatments and a cure for sickle cell disease. The segment captures Dr. Tisdale’s clinical trial at the NIH Clinical Center where he and his team are using gene therapy
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Progress in Gene-Editing Therapy
Exciting news! CRISPR Therapeutics and Vertex Announce Progress in Clinical Development Programs for the Investigational CRISPR/Cas9 Gene-Editing Therapy CTX001. They have dosed the first patient with sickle cell Disease. To find more about this research, ask your doctor. More hope is on the horizon! Read the press release to learn more.
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ASGCT Patient Education on Blood Disorders
What is this? The American Society of Gene & Cell Therapy (ASGCT) is proud to announce the first release of the Society’s Patient Education program, a new initiative for 2019. The new patient-centered portal is designed by ASGCT committee volunteers in coordination with patient advocacy groups to educate and inform patients, families, and the general
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Manual For Life by Paulo Andre Chenso
PAULO ANDRÉ CHENSO is a doctor and professor in London. He created a “MANUAL FOR LIFE”. IT’S WORTH A READ AND TO PUT IN PRACTICE. IN THE HEALTH: 01. Drink a lot of water. 02. Eat more what is born in trees and plants. 03. Live with the 3 E’s Energy. Enthusiasm and Empathy 04.
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Warrior University Online Series
Dear Sickle Cell Community, Join a 5-week webinar series on the topic “Blood Transfusions: What You Need to Know and Do”. The interactive series will include in-depth information on blood matching, iron overload, blood donations, and patient-provider communication techniques/skills. Register here for the educational series: https://ghpc.wufoo.com/forms/the-warrior-university-online-series/ *Registry and Education for Hemoglobinopathies and Hemovigilance/Transfusion Therapy in Georgia
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Holistic Health and Sickle Cell Disease Webinar
Holistic Health and Sickle Cell Disease: A focus on Mental and Behavioral Health Thursday, February 28, 2019 1:00 – 2:15 pm EST Register Here Sickle cell disease (SCD) affects millions globally, disproportionately impacting certain racial and ethnic minority populations, including African Americans, Latinos and people of Middle Eastern, Indian, Asian and Mediterranean descent. According to
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