Updates

November 30, 2020November 30, 2020
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 and their caregivers, a survey study has found. Surveyed ... Read more
November 23, 2020November 23, 2020
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 people with hereditary angioedema (HAE), according to 2.5 years ... Read more
November 20, 2020November 23, 2020
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 anxiety in people with rare diseases, negatively affecting their ... Read more
November 18, 2020November 18, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and ... Read more
November 13, 2020November 13, 2020
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 for eligible hereditary angioedema (HAE) patients. The agreement was ... 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

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

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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

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

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

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

Subscribe to our mailing list

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

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

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