Posts Tagged ‘SC News and Research’

On April 8-9, 2019 the Sickle Cell Disease Association of America (SCDAA) hosted its annual Advocacy Day Event in Washington, DC. This year’s Advocacy Day was an opportunity for patients and caregivers affected by sickle cell disease (SCD) to advocate for stable funding for research, better healthcare access, expanded programs, and increased education and awareness…

November 5-8, 2019 The American Society of Hematology (ASH) is hosting a workshop that will train health care professionals in some of the skills necessary to establish a center focused on the needs of adults living with SCD. Tackling SCD requires a team effort, therefore, ASH is encouraging teams to apply to attend the workshop.…

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) established a competitive college scholarship program to assist students with sickle cell disease (SCD) who will be attending an institution of higher learning in the United States. IASCNAPA plans to distribute four $1,000 scholarships this year. Applicants must have a form of SCD and…

The ASH Research Collaborative (ASH RC) with CISCRP, the organization’s community engagement partner, will conduct the ASH RC Sickle Cell Disease Clinical Trials Network (CTN) Community Engagement Workshops. Registration is open for our Atlanta workshop, to be held on May 18, 2019!  Why? To be a part of a new plan to create treatments that are…

All researchers are invited to take on the challenge of advancing cures for sickle cell disease (SCD). The Doris Duke Charitable Foundation is accepting applications through May 31, 2019, 3 pm ET to support research to advance curative approaches for SCD, including gene modification and drug therapies aiming to safely and sustainably increase red blood cells…

Talk to your doctor about enrolling in the study. ZUG, Switzerland and CAMBRIDGE and BOSTON, Mass. – April 16, 2019 (GLOBE NEWSWIRE) — CRISPR Therapeutics (Nasdaq: CRSP) and Vertex Pharmaceuticals Incorporated (Nasdaq: VRTX) today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track Designation for CTX001 for the treatment of transfusion-dependent beta…

On April 1, the Centers for Medicare & Medicaid Services released updates to the Medicare Advantage and Part D programs for 2020. The agency recommended that beneficiaries with SCD be excluded from the opioid safety edits. The agency references the Centers for Disease Control and Prevention Guideline for Prescribing Opioids for Chronic Pain, which states…

The American Society of Pediatric Hematology/Oncology’s 2019 Annual Conference will feature a session on sickle cell disease (SCD), Friday, May 3, from 4:45 pm – 6:15 pm. The session, titled “Putting an End to End Organ Damage in Sickle Cell Disease,” will be moderated by Dr. Courtney D. Thornburg. Though the survival for pediatric patients with…

The Centers for Disease Control and Prevention (CDC) released clarification on prescribing opioids to manage pain for certain conditions. The clarification, regarding CDC’s Guideline for Prescribing Opioids for Chronic Pain– issued in a letter from the agency to the American Society of Clinical Oncology (ASCO), the American Society of Hematology (ASH), and the National Comprehensive Cancer…