News

Art Contest Salutes Creativity of Rare Disease Communities

Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by the EveryLife Foundation for Rare Diseases to heighten awareness about rare disease communities and salute the creativity of its members. Awardees will be able to display their art and…

3 Methods for Measuring C1-INH Activity Give Comparable Results

Assessing C1-inhibitor (C1-INH) activity for the diagnosis and monitoring of hereditary angioedema (HAE) can be done through three distinct validated methods with similar accuracy, a new study found. The study, “Parallel comparison of three methodologies for measuring functional C1-inhibitor in Hereditary angioedema patients,” was published in …

New Ruconest Manufacturing Facility Will Be Built in 2021

Pharming Group has committed to building a new manufacturing facility in the Netherlands to expand production of Ruconest (conestat alfa), its treatment for acute attacks of hereditary angioedema (HAE). Construction will begin in mid-2021. Once finished, it will create at least 40 new jobs, the company said. “With an…

Just-approved Orladeyo Now Being Shipped to US Patients

Just a couple of weeks after its U.S. approval, Orladeyo (berotralstat) is now available for direct shipment to hereditary angioedema (HAE) patients in the United States who hold a prescription for the oral medication. According to BioCryst Pharmaceuticals, the maker of Orladeyo, the medicine will be provided exclusively…