Patricia Inácio, PhD, science writer —

Over a third of hereditary angioedema patients continue to experience an unpredictable rate of annual attacks, including those on long-term preventive therapy, a retrospective analysis shows. These findings highlight the variability of the disease and support the need for constant vigilance by patients and their doctors. The study, “…

Patients with hereditary angioedema (HAE) are willing to try new therapies that can effectively lessen disease burden with less frequent dosing, according to an interview-based study conducted by Astria Therapeutics. The findings were shared in a poster, titled “Burdens of Disease and Treatment in Hereditary…

Adalvo has completed a mandatory requirement for a marketing authorization in the European Union for its generic version of Firazyr (icatibant injection), which is approved for acute attacks in adults with hereditary angioedema (HAE), the company has announced. The successful closure of the decentralized procedure came…

The Israeli Ministry of Health has agreed to review, under an accelerated process, a marketing application for Orladeyo (berotralstat), BioCryst Pharmaceuticals’ oral preventive treatment for hereditary angioedema (HAE) attacks, in patients 12 and older. Neopharm Israel, one of the leading pharmaceutical companies in Israel, will distribute Orladeyo,…

Spain has added Ruconest (conestat alfa), Pharming’s treatment for acute attacks of hereditary angioedema (HAE), to its list of reimbursable medications. “We are delighted with this positive reimbursement decision by the Spanish Ministry of Health, as it means patients in Spain in need of new treatment options for…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

Pharma and patient organizations came together this year in celebration of the 10th annual HAE Awareness Day — set aside to call global attention to hereditary angioedema (HAE). Set annually on May 16, this event aims to increase awareness among the public, healthcare professionals, healthcare decision-makers, and industry…

Haegarda is now available to adolescent and adult hereditary angioedema (HAE) patients across Canada for the prevention of HAE attacks, according to CSL Behring, the therapy’s developer. The company announced its preventive treatment, made available for eligible HAE patients in April, can now be given in…

Japanese researchers have identified a new mutation in the SERPING1 gene linked to hereditary angioedema (HAE) in a 27-year-old woman with a history of recurrent swelling attacks. Her case was described in a report, “Hereditary angioedema with a novel mutation, c.1481G>C, in the SERPING1 gene,” published…

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…