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More Research Needed on Pregnancy-related HAE Attacks, Case Report Shows
More insight and study is needed into the symptoms, proper management, and potential complications of ...
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KalVista Anticipates Milestones in 2 HAE Treatment Candidates in Second Half of 2020
KalVista Pharmaceuticals anticipates beginning a Phase 2 clinical trial in the second half of this ... -
HAE International Translates Printable Emergency Card into 34 Languages
HAE International, a global nonprofit that supports local hereditary angioedema (HAE) patient groups and organizations, ... -
Cipla Given FDA Approval for Icatibant, Generic Version of Firazyr
Cipla has received final approval from the U.S. Food and Drug Administration (FDA) for a generic ... -
Preventive Takhzyro Reduces HAE Attacks Early in Treatment, Analysis Shows
Preventive treatment with Takhzyro (lanadelumab) significantly reduces the number of swelling attacks in people with hereditary angioedema ... -
Haegarda Safe, Effective in Older HAE Patients, Trial Analysis Shows
Regular Haegarda treatment in older people with hereditary angioedema (HAE) — those ages 65 and ... -
Prophylactic Takhzyro Effective for Broad Range of HAE Patients, Study Suggests
Preventive treatment with Takhzyro (lanadelumab) is effective at delaying and lowering the monthly rate of ... -
Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those ... -
Ruconest More Cost-effective Than Other On-demand Treatments for HAE Attacks
Ruconest, a recombinant human form of the C1 inhibitor protein, is more cost-effective than other ... -
Garadacimab Reduces HAE Attacks Significantly, Preliminary Phase 2 Trial Results Show
Preliminary results from a Phase 2 clinical trial testing the investigational therapy garadacimab for the ... -
Data Support Long-term Efficacy of Berotralstat in HAE
New clinical trial data show that BioCryst Pharmaceuticals‘ investigational therapy for hereditary angioedema (HAE), berotralstat, ... -
Coalition Will Address Racial Disparities in Rare Disease Communities
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on ... -
Patent Allowance Extends BioCryst’s Protection of Berotralstat for HAE
The U.S. Patent and Trademark Office (USPTO) issued a new allowance for a patent submitted ... -
Prefilled Syringe for At-home Use of Takhzyro Favored for Approval in EU
The Committee for Medicinal Products for Human Use (CHMP), part of the European Medicines Agency ... -
COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say
While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for ... -
Intellia Advancing NTLA-2002 as Gene-Editing Therapy Candidate for HAE
After showing a sustained reduction in kallikrein levels in animal models, Intellia Therapeutics will be ... -
Unity and EU-wide Efforts Focus of Online Rare Disease Meeting
Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual ... -
Costs Unsustainable for New Angioedema Preventive Therapies in US, Real-world Data Show
Costs are unsustainable for preventive treatment of hereditary angioedema (HAE) attacks with approved therapies Takhzyro or Haegarda, ... -
European Commission Approves Ruconest for Acute Swelling in Children with HAE
The European Commission has approved Pharming‘s Ruconest (conestat alfa) for the treatment of acute swelling episodes ... -
Potential Oral Therapy for HAE Seen To Be Effective as Firazyr in Monkey Model
A small molecule inhibitor being developed for hereditary angioedema (HAE) treatment, called PHA121, was as effective ... -
Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say
While there are few silver linings to the cloud created by COVID-19, the pandemic that ... -
NORD Opens COVID-19 Financial Aid Program for Rare Disease Community
The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people ... -
EMA to Review Berotralstat as Preventive Treatment for HAE Swelling Attacks
The European Medicines Agency has validated BioCryst Pharmaceuticals‘ application requesting the approval of berotralstat as a ... -
NORD’s Advice on COVID-19: You’re Stronger Than You Think
First, the bad news: If you’re one of the 30 million or so Americans with ... -
CHMP Favors EU Approval of Ruconest for Acute HAE Attacks in Children
The Committee for Medicinal Products for Human Use (CHMP), an arm of the European Medicines Agency, has recommended Ruconest (conestat ... -
NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in ... -
Berotralstat Lowers Rate of HAE Attacks and Possibly Their Severity, Trial Reports
Preventive treatment with berotralstat (BCX7353) significantly lowered the number of swelling attacks — including those needing ... -
Study Identifies Treatments That Reduce Acute Attacks in HAE Patients With Plasminogen Mutation
People with hereditary angioedema (HAE) caused by a specific mutation in the plasminogen gene have ... -
Preventive Treatment with Berotralstat Lowers HAE Attack Rate, BioCryst Says
BioCryst Pharmaceuticals presented new results from a Phase 3 clinical trial showing that preventive treatment ... -
New Production Facility for Ruconest, Pharming’s Acute HAE Treatment, Gets FDA Nod
The U.S. Food and Drug Administration (FDA) has approved a new production facility for Ruconest (conestat ... -
Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
The number of treatments for children with rare diseases has grown over the past decade, according ... -
Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media campaign ... -
Mutations May Raise Risk of Angioedema Linked to Blood Pressure Medicines
Mutations in the KCNMA1 gene may predispose certain people to angioedema caused by blood pressure medications, ... -
Test Using Dried Blood Spot May Be Simple Way to Diagnose HAE
A new diagnostic test for hereditary angioedema (HAE) can measure the activity of C1-inhibitor (C1-INH) ... -
Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles ... -
Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave ... -
FDA Agrees to Review Berotralstat as Preventive Treatment for HAE Attacks
The U.S. Food and Drug Administration (FDA) agreed to review BioCryst Pharmaceuticals‘ application requesting approval ...