News

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme “A Glimmer of Hope,” the competition is a means to “visually express the hope that exists for people affected by…

A case report suggests that the body has multiple ways to produce bradykinin, a molecule that can cause angioedema, in patients taking ACE inhibitors. The report, “Lisinopril-Induced Angioedema in a Patient with Plasma Prekallikrein Deficiency,” was published in the peer-reviewed journal TH Open. Angioedema can be…

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

BioCryst Pharmaceuticals is prepared to launch Orladeyo (berotralstat), an oral treatment for hereditary angioedema (HAE), by the end of the year if the medication is approved, the company has announced. “We are currently in an exciting transformation from a company primarily focused on R&D [research and development]…

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…

More insight and study is needed into the symptoms, proper management, and potential complications of pregnancy-related hereditary angioedema (HAE) attacks, according to a case report of a woman who is now in her third pregnancy. In this case, abdominal pain appeared as the woman’s main symptom, and her exacerbations…

KalVista Pharmaceuticals anticipates beginning a Phase 2 clinical trial in the second half of this year to test KVD824, an investigational preventive treatment for hereditary angioedema (HAE). In addition, the results of a Phase 2 clinical trial of KVD900, being investigated as an on-demand treatment for…

HAE International, a global nonprofit that supports local hereditary angioedema (HAE) patient groups and organizations, has expanded their emergency card template to a total of 34 languages — and plans to add more in the future. The emergency cards are a means for patients to quickly and…

Cipla has received final approval from the U.S. Food and Drug Administration (FDA) for a generic version of Firazyr (icatibant injection), an approved treatment for acute attacks in adults with hereditary angioedema (HAE). The company announced the FDA approval of its abbreviated new drug application for icatibant…