A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…
News
Robotic ducks were delivered recently as comfort companions to children with sickle cell disease (SCD) at the Children’s Regional Hospital at Cooper in South Jersey. The life-sized cuddly robot, called “My Special Aflac Duck,” were made available free to children, 3 and older, in a new collaboration between…
Exposure to systemic steroids — frequently used to treat asthma or ease inflammation — is significantly associated with a higher risk of painful vaso-occlusive crises (VOCs) leading to hospitalization in children and adults with sickle cell disease (SCD), a French study shows. “Individuals living with SCD often suffer…
While most adolescent boys and young men with sickle cell disease (SCD) report wanting biological children in the future, few are aware of the impact their disease and its treatments can have on their fertility, a small, pilot U.S. study suggests. Similar knowledge gaps were found for these patients’…
A team of researchers has created the most comprehensive atlas, or roadmap, to date of each step of human blood stem cell development — helping them identify the previously unknown molecular signature of blood stem cells and ending a longstanding debate on these cells’ specific cellular origin. The data, open…
The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…
Disrupting a specific area of the gene that encodes for adult hemoglobin — which is faulty in people with sickle cell disease (SCD) — led to an increase in the production of fetal hemoglobin, a version of the protein normally produced during fetal development, which can help relieve disease…
A renowned stem cell biologist has been honored with the 2022 Canada Gairdner International Award for his work that set the grounds for a new approach to treating sickle cell disease (SCD) and beta-thalassemia. Stuart H. Orkin, MD, is the David G. Nathan Distinguished Professor of Pediatrics at…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
Emmaus Life Sciences has launched a full-service telehealth platform that will allow people in the U.S. with sickle cell disease (SCD) greater and easier access to the approved therapy Endari (L-glutamine). Patients will be able to receive a same-day physician’s prescription for Endari, which can…
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