News

Orladeyo Sustainably Lowers HAE Attack Rates, Trial Data Show

Orladeyo (berotralstat) reduced the frequency of swelling attacks in people with hereditary angioedema (HAE) and improved their quality of life over the course of one year, according to the latest findings from the long-term APeX-S trial. The approved oral medication also was able to sustainably lower HAE attack…

Patient-collected Blood Samples May Help Predict Acute HAE Attacks

Finger-prick blood samples taken at home could help to provide a simple and convenient way to predict acute hereditary angioedema (HAE) attacks, preliminary results from the Hereditary Angioedema Kininogen Assay (HAEKA) study in Germany suggest. Samples collected during attacks over the study’s course are expected to lead to the discovery…

RARE-X, Global Genes to Help Collect Rare Disease Patient Data

In their continued efforts to improve health equity for people with rare diseases, Global Genes and RARE-X have joined forces to help advocacy groups collect patient data and make the most of that information. “Patient data is perhaps the most valuable asset rare disease communities can leverage to…

Patients Say They Want to Switch to Less Frequent Therapies

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…

Global Genes, Diversity Coalition Team Up to Advance Health Equity

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

HAEi Offers New Advocacy Courses, Patient App in 14 Languages

HAE International (HAEi) has expanded its free online training platform to include new courses on advocacy, disease-related information, and resources. “The HAEi Advocacy Academy is the premier online learning platform for the HAE Community,” Fiona Wardman, the non-profit’s chief regional patient advocate, said in a press release.