Posts Tagged ‘Living with Sickle Cell’
Support the Global Genes Team
Global Genes has formed a running team for the OC Marathon to raise money and awareness for rare disease community activities. Warriors – join the team to run, help volunteer, or come and cheer on the team as they run. Either way we would love to have you involved! For more information check out the…
Read MoreSCD Clinical Trials Network Workshops
ASH Research Collaborative Hosts SCD Community Engagement Workshops Join the ASH Research Collaborative for a series of fun and engaging Sickle Cell Disease Community Engagement Workshops this spring and summer, throughout the country for individuals living with sickle cell disease and their parents/guardians. The first workshop takes place April 13, 2019 in Chicago, IL! If…
Read MoreSCW Video: Iron Overload And Fatigue
SCW Video: Water
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…
Read MoreSC 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…
Read MoreProgress 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.
Read MoreSCW Video: Pain From A Shower
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…
Read MoreManual 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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