Patricia Inácio, PhD, science writer —

The burden that hereditary angioedema (HAE) has on patients’ quality of life is seldom discussed during clinical visits, a U.S. study suggests. The study also found that patients fail to fully describe disease symptoms during such appointments, so their struggles are not well-documented. Therefore, researchers recommend a more patient-driven…

A new mutation in the SERPING1 gene linked to hereditary angioedema (HAE) type 1 was identified in three of five members of a Spanish family. Results were published in a letter to the editor of the journal Pediatric Allergy and Immunology titled “Hereditary angioedema caused by a novel intronic variant of SERPING1.” HAE is a form of…

Swelling attacks affecting the airway usually occur in hereditary angioedema patients between the ages of 20 and 30 — and are more frequent among smokers, a study shows. However, the frequency of attacks was higher in people with acquired angioedema, a type of the chronic disorder in which…

Switching from under-the-skin injections to oral pills of Orladeyo (berotralstat), a preventive treatment, can be done without the need to taper prior therapy or go through complex regimens, according to a case study of a patient and her mother, both of whom have hereditary angioedema (HAE). The report,…

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 more…

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…