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Art Contest Salutes Creativity of Rare Disease Communities
Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare ...
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Better Quality of Life Evident in HAE Patients Using Takhzyro in Pivotal Trial
Treatment with Takhzyro (lanadelumab) significantly improves health-related quality of life in people with hereditary angioedema ... -
COVID-19 Inflammation May Result in Angioedema Symptoms, Case Report Finds
A case report describes a man with confirmed COVID-19 who developed acute angioedema — a skin ... -
What Do Most HAE Patients Want From Treatment? Fewer Attacks, Survey Finds
The vast majority of people with hereditary angioedema (HAE) stress the importance of their preventative ... -
3 Methods for Measuring C1-INH Activity Give Comparable Results
Assessing C1-inhibitor (C1-INH) activity for the diagnosis and monitoring of hereditary angioedema (HAE) can be ... -
New Ruconest Manufacturing Facility Will Be Built in 2021
Pharming Group has committed to building a new manufacturing facility in the Netherlands to expand ... -
Just-approved Orladeyo Now Being Shipped to US Patients
Just a couple of weeks after its U.S. approval, Orladeyo (berotralstat) is now available for direct ... -
Takhzyro Approved in China for Routine Prevention of HAE Attacks
Takeda’s Takhzyro (lanadelumab) has been approved in China for the routine prevention of hereditary angioedema ... -
Oral PHA121 May Be Better On-demand HAE Treatment Than Firazyr, Early Data Show
PHA121 (PHA-022121), Pharvaris‘ oral therapy for hereditary angioedema (HAE), outperformed Firazyr (icatibant acetate) — an ... -
FDA Approves Orladeyo, 1st Oral Treatment to Prevent HAE Attacks
The U.S. Food and Drug Administration has approved Orladeyo (berotralstat) as an oral treatment to ... -
New Generic Version of Firazyr Now Available in US to Treat Acute HAE Attacks
Icatibant injection, a generic form of Firazyr from Fresenius Kabi, is now available to adults ... -
Injectable Preventive Treatments Weigh on Patients and Caregivers, Surveys Show
Routine injectable treatments to prevent hereditary angioedema (HAE) attacks place a large burden on patients ... -
Takhzyro Safely Prevents HAE Attacks Over Long Term, Extension Study Shows
Takeda’s Takhzyro (lanadelumab) continues to safely prevent and reduce the frequency of swelling attacks in ... -
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and ... -
Takhzyro, for HAE Attacks, Moves Closer to Public Funding Across Canada
Takeda Canada announced reaching an agreement for public funding in Canada of Takhzyro (lanadelumab), its treatment ... -
Berotralstat Available to Eligible Patients in UK Through Early Access Program
Berotralstat — an oral therapy by BioCryst Pharmaceuticals for preventing swelling attacks in people with hereditary ... -
Berotralstat Significantly Lowers HAE Attack Frequency, Phase 3 Trial Reports
Preventive treatment with oral berotralstat (BCX7353) significantly lowers the frequency of swelling attacks in people with ... -
HAE Attack in Fetus Reported, Baby Responded to Mom’s Treatment
The first documented case of a hereditary angioedema (HAE) attack in an unborn child — whose ... -
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
A photo of a bespectacled young boy, his red baseball cap slightly askew as he ... -
KalVista Plans Phase 2 Trial for KVD824, Will Develop Factor XIIa Preventive Treatment
KalVista Pharmaceuticals is planning to initiate a Phase 2 trial of its investigational oral therapy ... -
Intellia’s NTLA-2002 Reduces Kallikrein Protein Levels for 11 Months in Preclinical Study
A single dose of NTLA-2002, Intellia Therapeutics’ investigational gene-editing therapy for hereditary angioedema (HAE), induces ... -
Fresh Frozen Plasma May Work to Treat HAE Swelling Attacks in Poorer Countries, Case Finds
In cases where targeted treatment for hereditary angioedema (HAE) is not available for rapid management ... -
Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting ... -
Children 6 and Older Can Use Haegarda to Prevent HAE Attacks, FDA Says
The U.S. Food and Drug Administration (FDA) has extended the use of Haegarda, a C1-INH ... -
Preventive Haegarda Reduces Swelling Attacks in Pediatric HAE Patients, Trial Data Shows
Preventive treatment with Haegarda, an under-the-skin C1-INH replacement medication by CSL Behring, significantly lowers the ... -
Bridge Medicines, Rockefeller Team Up to Develop New Therapy for HAE Type 3
Bridge Medicines and The Rockefeller University are collaborating to treat hereditary angioedema (HAE) by developing ... -
Enrollment Completed in Phase 2 Trial of Oral On-demand HAE Therapy KVD900
The Phase 2 clinical trial testing KalVista Pharmaceuticals‘ oral investigational therapy KVD900 as an on-demand treatment for hereditary angioedema (HAE) ... -
Preventive Berinert Treatment Protects Against Angioedema Attacks After Dental Procedures
Short-term preventive treatment with Berinert, a plasma-derived form of the C1 inhibitor protein, protects people with ... -
Small Hereditary Angioedema Study Supports Efficacy of Ionis’ ASOs
Antisense oligonucleotides (ASOs) being developed by Ionis Pharmaceuticals may reduce the frequency of attacks in ... -
Case Study Describes ACE Inhibitor-induced Angioedema in Patient With Plasma Prekallikrein Deficiency
A case report suggests that the body has multiple ways to produce bradykinin, a molecule ... -
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed ... -
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to ... -
Orladeyo Set to Launch by Year’s End if Approved, BioCryst Says
BioCryst Pharmaceuticals is prepared to launch Orladeyo (berotralstat), an oral treatment for hereditary angioedema (HAE), ... -
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated ... -
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 ... -
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 ... -
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease ... -
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 ... -
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 ... -
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 ... -
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 ... -
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 ... -
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) ... -
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 ...