SCD Resource Directory

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This article highlights an investigation into the Tarrant County Medical Examiner Office’s autopsy of Robert Miller, a man with sickle cell trait who died in jail custody in 2019 by what medical examiners determined was natural causes due to his sickle cell trait status. This cause-of-death determination ignores other information that immediately precluded Mr. Miller’s […]

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) has established a college scholarship program to assist U.S. SCD warriors. Applicants for IASCNAPA’s $1,500 scholarships must be enrolled in, or have been accepted by, a recognized and accredited post- secondary school, including college, university, or trade school. Applications are due by July 1, 2023. 

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) SCD Nursing Bootcamp aims to promote nursing excellence nationally and globally utilizing a train the trainer model. This training will be held from October 30 – November 3, 2023, at the UTHSC College of Nursing. Applications are due by July 1, 2023.

This month, U.S. Senators Chris Van Hollen (D-MD), Cory Booker (D-NJ), and Congresswoman Barbara Lee (D-CA) reintroduced the Sickle Cell Care Expansion Act, which, if passed, would strengthen the medical workforce that treats sickle cell and fund services for adults living with SCD.

The Sickle Cell Disease Association of America (SCDAA) developed its Clinical Trial Finder in partnership with Forma Therapeutics. The Clinical Trials Finder is a centralized, simple to navigate resource that helps SCD warriors, their caregivers, and families find clinical trials.

The American Society of Gene & Cell Therapy (ASGCT) website includes a clinical trials finder, which offers a curated list of applicable gene and cell therapy clinical trials for people living with diseases, like sickle cell. Individuals may filter their search by location, specific diagnosis, treatment modality, or enrollment status.

Last year, the Sickle Cell Disease Coalition (SCDC) hosted a webinar series on “Global Access to Sickle Cell Research & Clinical Trials,” which featured the efforts and perspectives of clinical researchers and institutions, and individuals living with SCD from around the world.

International Clinical Trials Day is observed on May 20th every year to mark the anniversary of the first randomized clinical study, which was conducted by James Lind in 1747. On Saturday, May 20, 2023, take a moment to celebrate the accomplishments of clinical research professionals in the sickle cell disease (SCD) field and learn about […]

Information about extra precautions to be taken with patients detected with Covid-19