Updates

June 13, 2019June 13, 2019
Takhzyro Induces Rapid Resolution of Hereditary Angioedema Attacks, New Data Analysis Shows

Treatment with Takhzyro (lanadelumab) effectively reduces the number of attacks in patients with hereditary angioedema even in early phases of treatment, new analysis of data ... Read more
June 6, 2019
Method of Blocking Kallikrein Could Help Develop Better HAE Therapies, Study Suggests

The unique mode each specific compound binds to and blocks the enzyme plasma kallikrein could lead to the development of improved therapies for patients ... Read more
May 30, 2019May 30, 2019
KVD900, KalVista’s Investigational Therapy for HAE, Fares Well in Phase 1 Trial

KalVista Pharmaceuticals‘ investigational therapy KVD900 for the treatment of hereditary angioedema (HAE) rapidly reduces the activity of plasma kallikrein, one of the drivers of HAE ... Read more
May 27, 2019May 24, 2019
Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries

RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their ... Read more
May 23, 2019
Potential Oral Therapy, BCX7353, Seen in Phase 3 Trial to Markedly Reduce HAE Attacks

Daily treatment with BCX735, an investigative oral inhibitor of plasma kallikrein by BioCryst Pharmaceuticals, was well-tolerated and lowered attack rates in hereditary angioedema (HAE) patients included in ... Read more

News

Cinryze Prophylaxis Reduces Number, Severity of HAE Attacks in Children, Trial Shows
May 16, 2019
Prophylactic (preventative) treatment with Cinryze reduced the number and severity of attacks in young children ...
News

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
May 15, 2019
With 250 rare diseases newly identified every year, scientists can barely keep up — ...
News

Nonprofit Group Works to Raise Rare Disease Awareness in India
April 25, 2019April 25, 2019
With an estimated 1.37 billion inhabitants, India will likely surpass China in five years ...
News

Takhzyro Lowers Monthly Attacks in Adolescents with HAE, Phase 3 Trial Shows
April 18, 2019
Takhzyro (lanadelumb), an antibody already approved for routine prevention of hereditary angioedema (HAE) attacks in patients ...
News

Variability in Plasma Donors May Explain Different Clinical Outcomes for Angioedema Patients, Study Says
April 11, 2019
Angiotensin-converting enzyme (ACE) activity levels can vary among different donors of fresh frozen plasma (FFP) — ...
News

Recently Identified PLG Gene Mutation Found in German Family with HAE, Study Reports
April 4, 2019
A recently described mutation in the plasminogen (PLG) gene has been reported in an additional family ...

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Haegarda Safe, Effective in the Long-term for Preventing Hereditary Angioedema Attacks, Study Finds
March 28, 2019
Haegarda, a concentrated form of C1 inhibitor (C1-INH), is safe and effectively helps to prevent hereditary ...
Preventive Medicines for HAE Type 1/2 Have Limited Cost-effectiveness, Review Finds
March 21, 2019
The three prophylactic medicines currently on the market for hereditary angioedema (HAE) — the C1 esterase ...
Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
March 15, 2019March 14, 2019
Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
March 12, 2019March 11, 2019
Patients with ACE Inhibitor-induced Swelling May Safely Switch to AT2 Blockers, Study Suggests
March 7, 2019
NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
March 5, 2019

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
February 28, 2019February 25, 2019
The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government ...
Under-the-skin Formulation of C1-INH Prevents Swelling in HAE Patients, Trial Shows
February 21, 2019
Vienna to Host RARE2019 Meeting on Rare Diseases
February 20, 2019February 20, 2019
Intestinal Hereditary Angioedema was Mistaken for Infectious Colitis in Case Report
February 14, 2019February 14, 2019

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide
February 12, 2019February 11, 2019
Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities ...
Shortened FXII Clotting Protein May Play Key Role in HAE with Normal C1-inhibitor, Study Suggests
February 7, 2019
ICD-10 Codes, ‘Really Important’ to Rare Disease Patients, Soon Up for Fresh Consideration
February 5, 2019February 5, 2019

News

Phase 1 Trial in Healthy Volunteers Supports Continued Development of ATN-249 for HAE
January 31, 2019
Attune Pharmaceuticals‘ ATN-249, an investigational kallikrein inhibitor for the prevention of swelling attacks in ...
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 ...
News

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 ...
News

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 ...

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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