Updates

September 25, 2020September 25, 2020
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 a series of compounds to inhibit the coagulation factor ... Read more
September 21, 2020September 21, 2020
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) attacks has completed enrollment, the company announced. Results from the ... Read more
September 18, 2020September 18, 2020
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 hereditary and acquired C1-inhibitor (C1-INH) deficiency from angioedema attacks ... Read more
September 9, 2020September 9, 2020
Small Hereditary Angioedema Study Supports Efficacy of Ionis’ ASOs

Antisense oligonucleotides (ASOs) being developed by Ionis Pharmaceuticals may reduce the frequency of attacks in people with hereditary angioedema (HAE), a small study suggests. The ... Read more
September 2, 2020September 2, 2020
Same But Different Photo Contest Celebrates People With Rare Diseases

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 ... Read more

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September 27, 2018September 27, 2018

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

News

Researchers from University of Chicago Medicine reported the case of a patient who developed orolingual angioedema after the administration of alteplase (sold under the brand name Activase), and suggest how physicians should proceed in case of an emergency. The study, ... Read more

Updates

Bridge Medicines, Rockefeller Team Up to Develop New Therapy for HAE Type 3

Enrollment Completed in Phase 2 Trial of Oral On-demand HAE Therapy KVD900

Preventive Berinert Treatment Protects Against Angioedema Attacks After Dental Procedures

Small Hereditary Angioedema Study Supports Efficacy of Ionis’ ASOs

Same But Different Photo Contest Celebrates People With Rare Diseases

Case Study Describes ACE Inhibitor-induced Angioedema in Patient With Plasma Prekallikrein Deficiency

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Orladeyo Set to Launch by Year’s End if Approved, BioCryst Says

New Streaming Channel Showcases Rare Disease Films

Rare Disease Communities Invited to Submit Works to 2020 Rare Artist Contest

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KalVista Anticipates Milestones in 2 HAE Treatment Candidates in Second Half of 2020

HAE International Translates Printable Emergency Card into 34 Languages

Cipla Given FDA Approval for Icatibant, Generic Version of Firazyr

Preventive Takhzyro Reduces HAE Attacks Early in Treatment, Analysis Shows

Haegarda Safe, Effective in Older HAE Patients, Trial Analysis Shows

Haegarda Safe, Effective in Older HAE Patients, Trial Analysis Shows

Prophylactic Takhzyro Effective for Broad Range of HAE Patients, Study Suggests

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Ruconest More Cost-effective Than Other On-demand Treatments for HAE Attacks, Study Estimates

Garadacimab Reduces HAE Attacks Significantly, Preliminary Phase 2 Trial Results Show

Data Support Long-term Efficacy of Berotralstat in HAE, BioCryst Says

Coalition Will Address Racial Disparities in Rare Disease Communities

Patent Allowance Extends BioCryst’s Protection of Berotralstat for HAE

Prefilled Syringe for At-home Use of Takhzyro Favored for Approval in EU

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Intellia Advancing NTLA-2002 as Gene-Editing Therapy Candidate for HAE

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Costs Unsustainable for New Angioedema Preventive Therapies in US, Real-world Data Show

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

European Commission Approves Ruconest for Acute Swelling in Children with HAE

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

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Bridge Medicines, Rockefeller Team Up to Develop New Therapy for HAE Type 3

Enrollment Completed in Phase 2 Trial of Oral On-demand HAE Therapy KVD900

Preventive Berinert Treatment Protects Against Angioedema Attacks After Dental Procedures

Small Hereditary Angioedema Study Supports Efficacy of Ionis’ ASOs

Same But Different Photo Contest Celebrates People With Rare Diseases

Case Study Describes ACE Inhibitor-induced Angioedema in Patient With Plasma Prekallikrein Deficiency

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Orladeyo Set to Launch by Year’s End if Approved, BioCryst Says

New Streaming Channel Showcases Rare Disease Films

Rare Disease Communities Invited to Submit Works to 2020 Rare Artist Contest

Subscribe to our mailing list

KalVista Anticipates Milestones in 2 HAE Treatment Candidates in Second Half of 2020

HAE International Translates Printable Emergency Card into 34 Languages

Cipla Given FDA Approval for Icatibant, Generic Version of Firazyr

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Preventive Takhzyro Reduces HAE Attacks Early in Treatment, Analysis Shows

Haegarda Safe, Effective in Older HAE Patients, Trial Analysis Shows

Haegarda Safe, Effective in Older HAE Patients, Trial Analysis Shows

Prophylactic Takhzyro Effective for Broad Range of HAE Patients, Study Suggests

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Ruconest More Cost-effective Than Other On-demand Treatments for HAE Attacks, Study Estimates

Garadacimab Reduces HAE Attacks Significantly, Preliminary Phase 2 Trial Results Show

Data Support Long-term Efficacy of Berotralstat in HAE, BioCryst Says

Coalition Will Address Racial Disparities in Rare Disease Communities

Patent Allowance Extends BioCryst’s Protection of Berotralstat for HAE

Prefilled Syringe for At-home Use of Takhzyro Favored for Approval in EU

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Intellia Advancing NTLA-2002 as Gene-Editing Therapy Candidate for HAE

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Costs Unsustainable for New Angioedema Preventive Therapies in US, Real-world Data Show

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

European Commission Approves Ruconest for Acute Swelling in Children with HAE

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

Pin It on Pinterest