News Angioedema Linked to ACE Inhibitor Use ‘Severely Underreported,’ Danish Study Finds

News Update Coming on Phase 2 Trial of KalVista’s Oral HAE Therapy KVD900

News Study Identifies Risk Factors That May Predispose Children to More Severe Initial Angioedema Attacks

News New Questionnaire Measures Patients’ View of Disease Control in Recurrent Angioedema

News Excessive Bradykinin Due to Troubled Enzyme Root Cause of HAE with Normal C1-INH, Study Says

News Study Validates Thai Version of Angioedema Quality of Life Questionnaire

News Top 10 Angioedema Stories of 2019

News KVD001 Protects DME Patients From Losing Their Vision, Phase 2 Trial Shows

News FDA Asked to Consider Approving Berotralstat Capsules to Prevent HAE Attacks

News Gene Therapy Takes Center Stage at 2019 NORD Summit

News Researchers Find Potential Biomarkers of ACE Inhibitor-induced Angioedema

News HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

News CDEC Recommends Reimbursement of Takhzyro in Canada as Preventive Treatment for HAE Attacks

News Rare Disease Film Festival Highlights Patient and Researcher Unity

News BioCryst, Torii Partner to Commercialize BCX7353 in Japan to Prevent HAE Attacks

News Lupus Could Be Risk Factor for Angioedema, Study Suggests

News Acquired Angioedema Can Be First Symptom of Underlying Conditions Such As Lymphoma, Case Reports Suggests

News Kalbitor Has Potential as Treatment for Angioedema Attacks in Lupus Teens Who Have Normal C1-IHN Levels, Case Reports Contend

News Mutation Detection Method Cheaper, Quicker for HAE Diagnosis Than Sequencing, Study Says

News Short-term Use of Ruconest Can Prevent HAE Attacks Triggered by Medical or Dental Work, Study Reports

News NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

News NICE Recommends Takhzyro as Preventive Treatment for HAE Attacks

News Preventative Haegarda Therapy Quickly Reduces Number of HAE Attacks, Trial Analysis Shows

News Pharvaris Raises $66M to Advance Oral Therapy for Hereditary Angioedema

News Study Supports Genetic Testing to Diagnose HAE of Unknown Cause

News ‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

News Firazyr Safely Treats Acute Attacks in Older Angiodema Patients, Study Reports

News At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

News New Rat Model of HAE More Closely Mimics Human Disease

News Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

News Firazyr of Limited Help with Angioedema Caused by ACE Inhibitors, Pooled Trial Data Suggest

News Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

News Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

News Regenxbio to Develop Antibody-based Gene Therapy for Hereditary Angioedema

News Guidelines Compiled for Diagnosing HAE in Emergency Rooms

News European Initiative Targets Diagnosis, Treatment of Rare Diseases

News Plasma-derived C1-INH Concentrate Acts Fast, Shortens Attack Duration in Aquired Angiodema, Study Finds

News Ruconest Can Safely and Effectively Treat Acute HAE Attacks in Children, Phase 2 Trial Shows

News Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients

News World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

News iTHRIVE to Fund Early Research Projects, Including Hereditary Angioedema

News NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

News Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

News Hereditary Angioedema Patients Have High Incidence of Fatty Liver Disease, Study Suggests

News ‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy

News Takhzyro Induces Rapid Resolution of Hereditary Angioedema Attacks, New Data Analysis Shows

News Method of Blocking Kallikrein Could Help Develop Better HAE Therapies, Study Suggests

News KVD900, KalVista’s Investigational Therapy for HAE, Fares Well in Phase 1 Trial

News Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries

News Potential Oral Therapy, BCX7353, Seen in Phase 3 Trial to Markedly Reduce HAE Attacks

News Cinryze Prophylaxis Reduces Number, Severity of HAE Attacks in Children, Trial Shows

News Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

News Nonprofit Group Works to Raise Rare Disease Awareness in India

News Takhzyro Lowers Monthly Attacks in Adolescents with HAE, Phase 3 Trial Shows

News Variability in Plasma Donors May Explain Different Clinical Outcomes for Angioedema Patients, Study Says

News Recently Identified PLG Gene Mutation Found in German Family with HAE, Study Reports

News Haegarda Safe, Effective in the Long-term for Preventing Hereditary Angioedema Attacks, Study Finds

News Preventive Medicines for HAE Type 1/2 Have Limited Cost-effectiveness, Review Finds

News Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

News Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

News Patients with ACE Inhibitor-induced Swelling May Safely Switch to AT2 Blockers, Study Suggests

News NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research

News WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April

News Under-the-skin Formulation of C1-INH Prevents Swelling in HAE Patients, Trial Shows

News Vienna to Host RARE2019 Meeting on Rare Diseases

News Intestinal Hereditary Angioedema was Mistaken for Infectious Colitis in Case Report

News Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide

News Shortened FXII Clotting Protein May Play Key Role in HAE with Normal C1-inhibitor, Study Suggests

News ICD-10 Codes, ‘Really Important’ to Rare Disease Patients, Soon Up for Fresh Consideration

News Phase 1 Trial in Healthy Volunteers Supports Continued Development of ATN-249 for HAE

News Case Report Cites Importance of Family History for Timely Diagnosis of HAE

News Mutant C1 Inhibitor Traps Healthy C1 Inhibitor in Cells of HAE Patients, Study Shows

News Canadian Physicians Need More Info About Hereditary Angioedema Tests, Study Finds

News, Recently Published Simple Diagnostic Test for Hereditary Angioedema Detects Mutations Missed by Current Methods

News Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish

News Asphyxiation Deaths Due to Angioedema Mostly Caused by Bradykinin-mediated Disease, Study Says

News Takhzyro Approved in Europe for Routine Prevention of Hereditary Angioedema Attacks

News Takhzyro Significantly Reduces Rate of Hereditary Angioedema Attacks, Phase 3 Trial Shows

News Therapies Reduce HAE Attacks, but Cost Too Much, Review Board Says

News Phase 2 Trial Planned for Investigational HAE Therapy KVD900 After Positive Phase 1 Results

News Delays in Diagnosing HAE Types 1 and 2 Progressively Shorter Over Time, Study Reports

News CHMP Favors EU Approval of Lanadelumab for Routine Prevention of HAE Attacks in Adolescents and Adults

News #NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach

News C1-INH-HAE Patients Show No Signs of Abnormal Blood Vessel Function, Study Reports

News Ruconest and Firazyr May Be Viable Options to Treat HAE Attacks During Pregnancy, Study Finds

News Mother’s Diagnosis of Daughter’s HAE Highlights Need for Clinicians to Listen to Patients, Families

News Patients with Angioedema Have Worse Response to Urticaria Treatment Xolair

News Blood Pressure Medication Valsartan Caused Angioedema During Surgery, Case Report Contends

News Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments

News Different Genetic Mutations Have Varying Effects on C1 Inhibitor Levels, HAE Severity, Study Finds

News Severe Abdominal Pain Could Be Sign of HAE, Case Study Reports

News Stroke Patient Develops Orolingual Angioedema After Alteplase Administration, Case Study Reports

News FDA Rejects Ruconest Label Expansion for HAE Swelling Prevention, Citing Need for More Clinical Data

News #NORDSummit – More Than 700 Expected to Attend Oct. 15-16 Rare Disease Summit in Washington

News Rare Case of Angioedema Linked to Crestor, a Statin, Reported in Case Study

News Pediatricians Should Be Aware of C1-INH-HAE, Hereditary Angioedema, Study Says

News Patients in Germany Treat Acute Attacks with Firazyr Earlier Than Those Elsewhere with Better Results, Study Finds

News Oral Treatment Candidate BCX7353 Quickly Eases HAE Attacks, Early Phase 2 Trial Findings Show

News Tick Bites May Trigger Red Meat Allergy Causing Delayed Angioedema, Case Study Reports

News Firazyr Lowers Attack Duration, But Increases Healthcare Costs in Angioedema Patients