Mary Chapman, features writer —

A research collaboration between Pentavere Research Group and Takeda Canada has led to the creation of one of the largest cohort datasets of patients with an ultra-rare form of hereditary angioedema (HAE) where C1 inhibitor (C1-INH) protein levels are normal. The public-private partnership seeks to “revolutionize” diagnosis and care…

Hereditary Angioedema (HAE) Awareness Day is observed every May 16 to call attention to a disorder that affects an estimated 1 in 50,000 to 150,000 people globally. Called “hae day :),” the observance targets targets policymakers, industry representatives, public authorities, researchers, and healthcare professionals, along with the general public.

Adarx Pharmaceuticals will use $200 million in oversubscribed Series C financing to further develop its clinical programs — including ADX-324, its treatment candidate for hereditary angioedema (HAE) — the clinical-stage biotechnology company announced. The funding round was led by Bain Capital Life Sciences and TCGX, an investment firm…

BioCryst Pharmaceuticals has tapped Swixx BioPharma to commercialize the hereditary angioedema (HAE) treatment Orladeyo (berotralstat) in central and Eastern Europe. Agreement terms call for Swixx, a Switzerland-based biopharmaceutical company, to handle commercialization of the oral therapy in 15 markets. “We continue to build partnerships with companies…

To continue to improve patient access to top-shelf angioedema care, the global network of Angioedema Centers of Reference and Excellence (ACARE) added six centers last year, two of them in Hong Kong. More centers are expected to join the ACARE network this year — more than a dozen…

A new hereditary angioedema (HAE) registry, touted as the first of its kind, is using real-world data to provide comprehensive insights into patients’ journeys. The Trio-CIIC HAE Registry derives from a partnership between real-world data provider Trio Health and the Consortium of Independent Immunology Clinics (CIIC), a professional organization…

HAE Awareness Day is observed around the world each May 16 to bring attention to hereditary angioedema (HAE) and those people the disorder affects. The goal is to heighten awareness among the general public, as well as healthcare professionals, decision-makers, and industry representatives. The theme for this year’s observance…

With a goal of finding new digital technologies and artificial intelligence (AI) solutions for patients with rare genetic disorders like hereditary angioedema (HAE), and for inflammatory bowel diseases, Takeda Canada has introduced an innovation challenge. Specifically, Takeda Canada is seeking new and breakthrough solutions in early diagnosis, as…

Cycle Pharmaceuticals has launched Sajazir, an injectable form of icatibant, as a new treatment option for acute attacks of hereditary angioedema (HAE) in adults. Patients who use Sajazir can take advantage of Cycle Vita, the company’s recently created rare disease product support hub. Icatibant, also sold as Firazyr,…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…