SC News and Research Archives - Page 5 of 17

ASH is Seeking Feedback on Two New SCD Guidelines on Pain and Transplantation

The American Society of Hematology (ASH) is seeking public comments on two draft clinical practice guidelines: sickle cell disease (SCD)-related pain, and SCD-related transplantation. The deadline for comments is May 13, 2019 and related materials can be found on the ASH Website. In 2018, the first three of ASH’s series of five SCD guidelines opened for public […]

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SCD Cure through Stem Cell Transplant

Living with Sickle Cell, SC News and Research / Brooke Pillifant

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 their first stem cell transplant. On behalf of Sickle Cell Warriors, a huge congratulations to Dr. Jain and his entire team! Click here to read the entire article.

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SC and CBS 60 Minutes

Living with Sickle Cell, SC News and Research / Brooke Pillifant

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

Living with Sickle Cell, SC News and Research / Brooke Pillifant

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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Sickle Cell Disease Therapeutics Conference

Living with Sickle Cell, SC News and Research / Brooke Pillifant

Annual Sickle Cell Disease Therapeutics Conference September 13, 2018 GBT will host the 7th Annual Sickle Cell Disease Therapeutics Conference (SCDTC) at the Park Central Hotel in New York City on September 13, 2018. This annual meeting brings together healthcare professionals, patients, community based organizations and advocates, investors, policy makers and industry representatives. They will

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GBT’s Phase 3 HOPE study Results

Advocacy and Activism, Living with Sickle Cell, SC News and Research / Brooke Pillifant

GBT Announces Positive Top-line Data from Part A of the Phase 3 HOPE Study of Voxelotor in Sickle Cell Disease Primary Endpoint Achieved; 58 Percent of Patients on Voxelotor Dosed with 1500 mg at Week 12 Exceeded 1 g/dL Increase in Hemoglobin Versus 9 Percent of Placebo (p<0.0001) Company Met with FDA on June 25

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5th Annual Sickle Cell Disease Patient & Family Educational Symposium

Living with Sickle Cell, SC News and Research / Brooke Pillifant

SCW INVITES YOU! The Patients, Caregivers and CBOs of the SC Community Consortium are pleased to invite you to attend the 5th Annual Sickle Cell Disease Patient & Family Educational Symposium from July 18-22, 2018 in Memphis, Tennessee! www.sicklecellconvention.com ABOUT THE SYMPOSIUM Most importantly, the SCD Patient & Family Educational Symposium (known throughout the SC community as the Warrior

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Genetic Testing for Families

Living with Sickle Cell, SC News and Research / Brooke Pillifant

Genetic Testing for Families Affected by Genetic Recessive Disorders DNACheckup is a fairly new non-profit organization. It is geared towards providing affordable DNA testing to families of patients with previously diagnosed recessive genetic disorders. First, patients can order the tests online. Tests ship directly to the person who orders them. We work with the lab

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World Sickle Cell Day 2018

1 Comment / Advocacy and Activism, Featured Warrior, Living with Sickle Cell, Newest Features, SC News and Research, Tosin’s Corner / Brooke Pillifant

World Sickle Cell Day Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and awareness of sickle cell disease on a global scale. For us warriors, it is like your sickle cell birthday!!! We have

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It’s Your #SickleCell Birthday!!!

SC News and Research / SC Warrior

Did you know that your #SickleCell Birthday is around the corner? SCW shares her personalized letter to friends.

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