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Rare Disease Report®

The Rare Disease Report page is a resource for medical news and expert insights on rare diseases. This page features expert-led coverage, articles, videos and research on the therapies and development of treatments for sickle cell disease, multiple myeloma, and more.

The prevalence rate of VTE was 2% among a large population of SCD  patients  in Nigeria. 

Low Prevelance of VTE Observed Among Cohort with Sickle Cell Disease

There is not much known on the link between sickle cell disease and romantic relationships, particularly from the male perspective.

Maintaining Relationships Challenging for Young Men With Sickle Cell

Dr. Temeia Martin talks about how her team identified the transition period as a major obstacle for patients with sickle cell disease and what her task force has implemented as a solution.

Temeia Martin, MD: Transitioning SCD Patients from Pediatric to Adult Care

An increased risk of obesity and decreased risk of abnormal weight loss was also observed in patients born to mothers with sickle cell disease.

Increased Risk of ADHD in Children Exposed to Maternal Sickle Cell Disease

With World Sickle Cell Day approaching, Dr. Titi Fasipe reflects on the developments within the field, such as the continued conversation of disparities and the increased comfort level with new therapies.

Titilope Fasipe, MD, PhD: Confidence in Treating Sickle Cell with Disease Modifying Drugs

Some of the favorable responses to voxelotor treatment and signs of hematologic response after voxelotor treatment included increased Hb levels, decreased reticulocyte percentage, and decreased total bilirubin. 

Voxelotor Results in Hematologic Improvements for Sickle Cell Disease

Intravenous opioid use for VOC decreased by 52% in inpatient services between 2017-2018, while oral opioid use increased.

Oral Opioids For Sickle Cell Increased With Intravenous Opioid Shortage

The agency also granted rare pediatric disease designations for inclacumab and GBT601.

FDA Grants Pair of Sickle Cell Treatments Orphan Drug Status

In a late-breaking presentation at ASGCT 2022, investigators shared preclinical results of a gene-editing strategy that seeks to reactivate developmentally silenced fetal hemoglobin (HbF, α2γ2) in order to replace defective sickle hemoglobin (HbS, α2βS2).

Early Momentum for a Genomic Approach to Sickle Cell Disease Therapy

Dr. Carolyn Rowley talks about the Cayenne Wellness Center's mental health initiative for individuals with sickle cell disease and shares the story of one of her first patients.

Carolyn Rowley, PhD: Patients with Sickle Cell Disease are Born into Pain

Sickle Cell condition center page, resources on the topics of medical news and expert insight into sickle cell disease can be found. Content includes articles, interviews, videos, podcasts, and breaking news on sickle cell research, treatment, and drug development.

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