Updates

January 18, 2021January 18, 2021
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 (HAE), new data from its pivotal clinical trial show. ... Read more
January 15, 2021January 15, 2021
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 symptom that had not previously been associated with the ... Read more
January 11, 2021January 11, 2021
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual ... Read more
January 8, 2021January 8, 2021
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 therapy correcting C1 inhibitor protein deficiency, allowing for fewer ... Read more
January 4, 2021January 4, 2021
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 done through three distinct validated methods with similar accuracy, ... 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

COVID-19 Inflammation May Result in Angioedema Symptoms, Case Report Finds

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

What Do Most HAE Patients Want From Treatment? Fewer Attacks, Survey Finds

3 Methods for Measuring C1-INH Activity Give Comparable Results

New Ruconest Manufacturing Facility Will Be Built in 2021

Just-approved Orladeyo Now Being Shipped to US Patients

Takhzyro Approved in China for Routine Prevention of HAE Attacks

Oral PHA121 May Be Better On-demand HAE Treatment Than Firazyr, Early Data Show

FDA Approves Orladeyo, 1st Oral Treatment to Prevent HAE Attacks

New Generic Version of Firazyr Now Available in US to Treat Acute HAE Attacks

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NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

Injectable Preventive Treatments Weigh on Patients and Caregivers, Surveys Show

Takhzyro Safely Prevents HAE Attacks Over Long Term, Extension Study Shows

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Takhzyro, for HAE Attacks, Moves Closer to Public Funding Across Canada

Berotralstat Available to Eligible Patients in UK Through Early Access Program

Berotralstat Significantly Lowers HAE Attack Frequency, Phase 3 Trial Reports

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

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

Preventive Berinert Treatment Protects Against Angioedema Attacks After Dental Procedures

Small Hereditary Angioedema Study Supports Efficacy of Ionis’ ASOs

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

Better Quality of Life Evident in HAE Patients Using Takhzyro in Pivotal Trial

COVID-19 Inflammation May Result in Angioedema Symptoms, Case Report Finds

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

What Do Most HAE Patients Want From Treatment? Fewer Attacks, Survey Finds

3 Methods for Measuring C1-INH Activity Give Comparable Results

New Ruconest Manufacturing Facility Will Be Built in 2021

Just-approved Orladeyo Now Being Shipped to US Patients

Takhzyro Approved in China for Routine Prevention of HAE Attacks

Oral PHA121 May Be Better On-demand HAE Treatment Than Firazyr, Early Data Show

FDA Approves Orladeyo, 1st Oral Treatment to Prevent HAE Attacks

New Generic Version of Firazyr Now Available in US to Treat Acute HAE Attacks

Subscribe to our mailing list

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

Injectable Preventive Treatments Weigh on Patients and Caregivers, Surveys Show

Takhzyro Safely Prevents HAE Attacks Over Long Term, Extension Study Shows

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Takhzyro, for HAE Attacks, Moves Closer to Public Funding Across Canada

Berotralstat Available to Eligible Patients in UK Through Early Access Program

Berotralstat Significantly Lowers HAE Attack Frequency, Phase 3 Trial Reports

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

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

Preventive Berinert Treatment Protects Against Angioedema Attacks After Dental Procedures

Small Hereditary Angioedema Study Supports Efficacy of Ionis’ ASOs

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