A virtual reality program designed to provide a distraction from pain may be an effective complementary therapy for children who are hospitalized for a sickle cell crisis, a study shows. The study, “Virtual reality as complementary pain therapy in hospitalized patients with sickle cell disease,” was published in the journal…
News
#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach
With the U.S. midterm elections now less than two weeks away, patient advocacy groups are solidly focused on a range of hot-button issues, from the Orphan Drug Tax Creditand affordable health insurance to future funding for rare disease research. Yet “whether Democrats take over the House or Senate, or…
Healthcare professionals, scientists and field experts learned about the latest advances in the diagnosis and treatment of sickle cell and related disorders at the 12th Annual Sickle Cell Disease and Thalassaemia (ASCAT) conference. Biopharmaceutical company Emmaus Life Sciences sponsored the Oct. 22-24 conference in London. Its theme was “Sickle…
HemoType SC is a Fast, Inexpensive Diagnostic Tool for Sickle Cell Disease Screening, Study Shows
The diagnostic test HemoType SC is a viable option for the highly sensitive, specific, inexpensive, and rapid diagnosis of sickle cell disease, a large multi-center study shows. The test can be especially valuable for rapid detection and newborn screening programs in regions with low healthcare resources. The study, “…
Many sickle cell disease (SCD) patients use marijuana for its medicinal benefits, according to an anonymous survey by researchers from Yale New Haven Hospital and Yale University. These results show that there is a need to study the effects of marijuana on these patients and to consider whether sickle cell…
Novartis’ investigational therapy for sickle cell disease (SCD), crizanlizumab (SEG101), was seen to reduce the number of patients reporting a pain crisis — including in those with a recent history of multiple crises — a post-hoc analysis of the SUSTAIN Phase 2 study reports. More patients (35.8%)…
A five-year partnership among The Sickle Cell Disease Association of America (SCDAA), the Sickle Cell Foundation of Georgia (SCFG), and the American Red Cross has been launched to encourage blood donation, with focus on African-Americans. As part of the partnership, educational campaigns to generate awareness about sickle cell disease…
A major distribution agreement with Cardinal Health will make Endari (L-glutamine) available in pharmacies nationwide that use Cardinal as their supplier, Emmaus Life Sciences announced. Already available to sickle cell disease patients in 36 states, Washington, D.C., and Puerto Rico, this agreement further expands the distribution network of…
Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced to seven years in federal prison for securities and wire fraud while heading San Diego-based Retrophin. As founder and CEO of another company (then known as Turing Pharmaceuticals), in late 2015 Shkreli bought the rights…
More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to converge on Washington, D.C., next month for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit. The Oct. 15-16 event, sponsored by the National Organization for Rare Diseases (NORD), takes place at the…
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