Updates

February 14, 2019February 14, 2019
Intestinal Hereditary Angioedema was Mistaken for Infectious Colitis in Case Report

Intestinal hereditary angioedema (HAE) should be considered as a possible cause of abdominal pain, even in patients with normal C1 inhibitor protein levels, suggests a case report ... Read more
February 12, 2019February 11, 2019
Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide

Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions ... Read more
February 7, 2019
Shortened FXII Clotting Protein May Play Key Role in HAE with Normal C1-inhibitor, Study Suggests

An abnormally short form of the clotting protein factor XII (FXII), caused by specific mutations in its gene, may lead to swelling episodes in ... Read more
February 5, 2019February 5, 2019
ICD-10 Codes, ‘Really Important’ to Rare Disease Patients, Soon Up for Fresh Consideration

G71.01 is, literally, the code for Duchenne muscular dystrophy. Q93.51 stands for Angelman syndrome, and G40.419 means Dravet syndrome. All three designations became official ... Read more
January 31, 2019
Phase 1 Trial in Healthy Volunteers Supports Continued Development of ATN-249 for HAE

Attune Pharmaceuticals‘ ATN-249, an investigational kallikrein inhibitor for the prevention of swelling attacks in hereditary angioedema (HAE) patients, was found generally safe and well-tolerated ... Read more

News

Case Report Cites Importance of Family History for Timely Diagnosis of HAE
January 24, 2019
The case of a man with hereditary angioedema (HAE) who remained undiagnosed for 62 ...
News

Mutant C1 Inhibitor Traps Healthy C1 Inhibitor in Cells of HAE Patients, Study Shows
January 17, 2019
Some mutations in the SERPING1 gene that cause hereditary angioedema (HAE) result in an abnormal form ...
News

Canadian Physicians Need More Info About Hereditary Angioedema Tests, Study Finds
January 10, 2019
Physicians in Canada need better education about the multiple biological assays used to diagnose ...
News, Recently Published

Simple Diagnostic Test for Hereditary Angioedema Detects Mutations Missed by Current Methods
January 3, 2019January 8, 2019
Researchers have developed a more cost-effective supporting diagnostic test for hereditary angioedema (HAE) to detect genetic ...
News

Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish
December 21, 2018December 21, 2018
Cash-strapped governments across the 28-member European Union are struggling to control runaway healthcare expenditures ...
News

Asphyxiation Deaths Due to Angioedema Mostly Caused by Bradykinin-mediated Disease, Study Says
December 13, 2018
Asphyxiation caused by head and neck angioedema — swelling and fluid accumulation in the ...

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Takhzyro Approved in Europe for Routine Prevention of Hereditary Angioedema Attacks
December 6, 2018
Takhzyro (lanadelumab), a kallikrein inhibitor by Shire, has been approved in Europe for the routine prevention ...
Takhzyro Significantly Reduces Rate of Hereditary Angioedema Attacks, Phase 3 Trial Shows
December 4, 2018
Routine treatment with Shire‘s Takhzyro (lanadelumab) — given as a 300 mg dose every two weeks ...
Therapies Reduce HAE Attacks, but Cost Too Much, Review Board Says
November 29, 2018November 29, 2018
Phase 2 Trial Planned for Investigational HAE Therapy KVD900 After Positive Phase 1 Results
November 15, 2018
Delays in Diagnosing HAE Types 1 and 2 Progressively Shorter Over Time, Study Reports
November 8, 2018
CHMP Favors EU Approval of Lanadelumab for Routine Prevention of HAE Attacks in Adolescents and Adults
November 1, 2018November 1, 2018

#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach
October 30, 2018October 29, 2018
With the U.S. midterm elections now less than two weeks away, patient advocacy groups ...
C1-INH-HAE Patients Show No Signs of Abnormal Blood Vessel Function, Study Reports
October 25, 2018
Ruconest and Firazyr May Be Viable Options to Treat HAE Attacks During Pregnancy, Study Finds
October 23, 2018
Mother’s Diagnosis of Daughter’s HAE Highlights Need for Clinicians to Listen to Patients, Families
October 18, 2018

Patients with Angioedema Have Worse Response to Urticaria Treatment Xolair
October 16, 2018
Angioedema seems to predict poorer responses and lower chances of remission in chronic urticaria ...
Blood Pressure Medication Valsartan Caused Angioedema During Surgery, Case Report Contends
October 11, 2018
Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments
October 9, 2018

News

Different Genetic Mutations Have Varying Effects on C1 Inhibitor Levels, HAE Severity, Study Finds
October 4, 2018October 4, 2018
Deletion mutations in the SERPING1 gene lead to lower function levels of the C1 ...
News

Severe Abdominal Pain Could Be Sign of HAE, Case Study Reports
October 2, 2018
Hereditary angioedema (HAE) can present itself as a sudden and severe abdominal pain, even ...
News

Stroke Patient Develops Orolingual Angioedema After Alteplase Administration, Case Study Reports
September 27, 2018September 27, 2018
Researchers from University of Chicago Medicine reported the case of a patient who developed ...
News

FDA Rejects Ruconest Label Expansion for HAE Swelling Prevention, Citing Need for More Clinical Data
September 25, 2018
The U.S. Food and Drug Administration has rejected Pharming’s request to expand the label ...
News

#NORDSummit – More Than 700 Expected to Attend Oct. 15-16 Rare Disease Summit in Washington
September 21, 2018September 21, 2018
More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to ...
News

Rare Case of Angioedema Linked to Crestor, a Statin, Reported in Case Study
September 20, 2018
Medications that lower cholesterol levels, collectively known as statins, can in rare instances trigger ...
News

Pediatricians Should Be Aware of C1-INH-HAE, Hereditary Angioedema, Study Says
September 18, 2018
Although the symptoms of hereditary angioedema due to C1 inhibitor deficiency (C1-INH-HAE) present in ...
News

Patients in Germany Treat Acute Attacks with Firazyr Earlier Than Those Elsewhere with Better Results, Study Finds
September 13, 2018
Patients in Germany treat acute hereditary angioedema attacks with Firazyr (icatibant) earlier and have fewer ...
News

Oral Treatment Candidate BCX7353 Quickly Eases HAE Attacks, Early Phase 2 Trial Findings Show
September 11, 2018
The oral treatment candidate BCX7353 eases hereditary angioedema (HAE) attacks, reduces the occurrence of symptoms, ...

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

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