Updates

October 30, 2020October 30, 2020
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 symptoms resolved after treating the mother with the recombinant ... Read more
October 26, 2020October 28, 2020
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 enjoys time outside, will be featured on the front ... Read more
October 23, 2020October 23, 2020
Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its ... Read more
October 19, 2020October 19, 2020
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 KVD824 as a preventive treatment for hereditary angioedema (HAE) ... Read more
October 16, 2020October 16, 2020
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 sustained reductions in the activity of plasma kallikrein — ... 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

HAE Attack in Fetus Reported, Baby Responded to Mom’s Treatment

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

KalVista Plans Phase 2 Trial for KVD824, Will Develop Factor XIIa Preventive Treatment

Intellia’s NTLA-2002 Reduces Kallikrein Protein Levels for 11 Months in Preclinical Study

Fresh Frozen Plasma May Work to Treat HAE Swelling Attacks in Poorer Countries, Case Finds

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

Children 6 and Older Can Use Haegarda to Prevent HAE Attacks, FDA Says

Preventive Haegarda Reduces Swelling Attacks in Pediatric HAE Patients, Trial Data Shows

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

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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

More Research Needed on Pregnancy-related HAE Attacks, Case Report Shows

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

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

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

HAE Attack in Fetus Reported, Baby Responded to Mom’s Treatment

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

KalVista Plans Phase 2 Trial for KVD824, Will Develop Factor XIIa Preventive Treatment

Intellia’s NTLA-2002 Reduces Kallikrein Protein Levels for 11 Months in Preclinical Study

Fresh Frozen Plasma May Work to Treat HAE Swelling Attacks in Poorer Countries, Case Finds

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

Children 6 and Older Can Use Haegarda to Prevent HAE Attacks, FDA Says

Preventive Haegarda Reduces Swelling Attacks in Pediatric HAE Patients, Trial Data Shows

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

Subscribe to our mailing list

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

More Research Needed on Pregnancy-related HAE Attacks, Case Report Shows

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

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

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