The National Academies of Sciences, Engineering, and Medicine is developing a strategic plan and blueprint for addressing sickle cell disease in the United States. The committee will provide guidance on priorities for programs, policies, and research. On Tuesday, April 16, 2019, the Committee on Addressing Sickle Cell Disease: A Strategic Blueprint and Plan for Action convened […]
National Academies Sickle Cell Meeting Read More »
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
SCDAA Hosts Annual Advocacy Day Event Read More »
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.
ASH Sickle Cell Disease Centers Workshop for Health Care Professionals Read More »
July 24 – 28, 2019 Plano, TX The Annual Sickle Cell Disease Patient & Family Educational Symposium is the only national sickle cell convention designed, created, and hosted by the sickle cell patient and family community. Each year the meeting is hosted by a partnership of sickle cell community-based organizations, patients, and advisors. We are
6th Annual Sickle Cell Patient & Family Educational Symposium Read More »
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
Scholarships Available for Individuals Living With SCD Read More »
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
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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
New Funding Opportunity for Researchers – Deadline May 31, 2019 Read More »
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
ASPHO Conference – Session on Sickle Cell Disease Read More »
