This patient and caregiver survey seeks to understand the experience sickle cell patients have had with their disease as well as their interaction with the healthcare system. By learning more about your journey or that of your child, we hope to help inform how companies can develop novel products that would better serve sickle cell […]
Sickle Cell Phone Survey Opportunity for Patients and Caregivers! Read More »
SCDC Sickle Cell Data Collection program Register for Webinar “What’s New at SCDAA” Wednesday, April 24, 2019 10:00 AM – 11:30 PM PST Register now: https://attendee.gotowebinar.com/register/1778776015181580301 Presented by Ms. Beverley Francis-Gibson, SCDAA President and CEO, and Dr. Biree Andemariam, SCDAA Chief Medical Officer. Tracking California’s Sickle Cell Data Collection for California program invites you to attend a webinar, “What’s New at the
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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
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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
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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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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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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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