Living with Sickle Cell

Posts feature topics on work, school, travel, life, diet and all other coping strategies with sickle cell.

SCD Cure through Stem Cell Transplant

Exciting news!! Akshat Jain, MD, Director of Pediatric Hematology-Oncology at Loma Linda University Children's Hospital and his team cures a Sickle Cell Disease patient through...

Sickle Cell Phone Survey Opportunity for Patients and Caregivers!

This patient and caregiver survey seeks to understand the experience sickle cell patients have had with their disease as well as their interaction with...

Webinar “What’s New at SCDAA”

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...

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...

SCD 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...

SCW Video: Iron Overload And Fatigue

https://www.youtube.com/watch?v=DJTqiHUeYok&t=1s

SCW Video: Water

https://www.youtube.com/watch?v=FRdoEUxQbXA&t=195s

FDA Public Meeting – Patient Perspectives on the Impact of Rare...

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...

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...

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...
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