NEWS
Agreement for further preclinical development signed
Bridge Medicines and The Rockefeller University has signed an exclusive license agreement to further develop a series of small molecule inhibitors of activated Factor XII (FXIIa) discovered in the laboratory of Jan L. Breslow, M.D. [...]
On the way to new oral HAE treatment
At the presentation of the operational update and released financial results for the first fiscal quarter ended 31 July 2020 KalVista Pharmaceuticals, Inc. CEO Andrew Crockett says: “We are pleased that our KVD900 Phase 2 trial has [...]
Study supports continued development of experimental treatment
Ionis Pharmaceuticals, Inc. announces the publication of the results from a compassionate-use study evaluating IONIS-PKKRx and IONIS-PKK-LRx in patients living with severe bradykinin-mediated angioedema in The New England Journal of Medicine(NEJM). IONIS-PKKRx and IONIS-PKK-LRx are [...]
Data from compassionate use program of Ruconest in COVID-19 patients
Pharming Group N.V. announces the publication of data in the peer-reviewed journal, Frontiers in Immunology, from a compassionate use programme of five patients with confirmed COVID-19 (SARS-CoV-2) infections hospitalized with related severe pneumonia that were [...]
First patient enrolled in COVID-19 clinical trial with Ruconest
The first patient has been enrolled in a randomized, controlled, investigator-initiated clinical trial in up to 150 patients for the treatment with Ruconest (recombinant human C1 inhibitor) of patients with confirmed COVID-19 (SARS-CoV-2) infections hospitalised [...]
Intellia expects IND for HAE drug in H2 of 2021
From Intellia Therapeutics, Inc.’s presentation of the financial results for the second quarter of 2020: NTLA-2002 is a wholly owned, in vivo development candidate for the treatment of HAE. Building on Intellia’s modular lipid nanoparticle [...]
BioCryst will launch its first oral HAE drug this year
“We are currently in an exciting transformation from a company primarily focused on R&D to one that is about to launch its first oral drug to patients with HAE (ORLADEYO) this year. We expect to [...]
Firazyr included in clinical trials for COVID-19 cure
Together with the COVID R&D Alliance partners AbbVie, Inc. and Amgen Inc., Takeda Pharmaceutical Co. Ltd. has enrolled the first patients in the I-SPY COVID Trial (Investigation of Serial Studies to Predict Your COVID Therapeutic Response with [...]
Final approval for generic version of Firazyr
Cipla Limited has received final approval for its Abbreviated New Drug Application (ANDA) for Icatibant Injectable 30mg/3mL from the United States Food and Drug Administration (US FDA). Cipla’s Icatibant Injectable Pre-Filled Syringe 30mg/3mL is AP-rated generic [...]
America Recognizes Chronic Disease Day 2020
State and city governments, national patient advocacy groups, and local communities across the United States of America came together on 10 July 2020 to recognize Chronic Disease Day and support the chronic and rare disease communities during [...]
Updates from the HAEi Youngsters’ Community
It has been almost two and a half years since the idea of the HAEi Youngsters Community was officially launched at the 2018 HAE Global Conference in Vienna, Austria. However, young HAE patients have been [...]
True Partnership can Bring the Best to Patient Care
Late 2019, HAE International and the non-profit organization of leading clinical and research facilities in the field of allergy and asthma GA2LEN established GA2LEN/HAEi Angioedema Centers of Reference and Excellence – or in short ACARE. [...]
Great HAE Global Walk Despite Pandemic
As HAE friends around the globe will know the annual hae day :-) aims to raise awareness worldwide – and as part of the efforts to raise awareness HAE International organizes the HAE Global [...]
Emergency Card now in 34 languages
No matter if your preferred language is Arabic, Chinese, Greek, Latvian or Spanish there is an Emergency Card from HAE International for you. “As a matter of fact, we are presently at 34 languages and [...]
News from Panama
Due to the restrictions that have been implemented in several countries, not many countries held events related to hae day :-) 2020. In Panama the group of patients managed two religious services that were [...]
News from Japan
From President Beverley Yamamoto, HAE Japan As in previous years, on 22 February 2020 we hosted the Rare Disease Day event for Kobe City. Many other Rare Disease Day events had been cancelled due [...]
News from Spain
From President Sarah Smith, AEDAF Awareness day: After having to cancel its 22nd General Assembly and Annual Meeting, which was due to take place in April, and with very strict confinement measures in Spain [...]
News from Russia
From Chairman Elena Bezbozhnaya, HAE Russia Under quarantine, providing support for patients with HAE takes on special significance. HAE Russia launched a new online project for children and held several remote meetings for members [...]
News from Colombia
In commemoration of hae day :-) 2020, HAE Colombia organized the first Instagram Live, in which the leader the organization, Jessika Torres spoke with the expert Dr. Margarita Olivares about HAE. Also, in the [...]
News from China
On 16 May 2020, HAE China in collaboration with the Chinese Organization for Rare Disease (CORD), with the support of Takeda China, held an online live event with the theme “Change edema to zero, [...]
News from UK
From Chief Executive Officer, Laura Szutowicz, HAE UK It seems no time at all since I wrote the last News from the UK, in early March 2020. It was full of the “I am [...]
News from Canada
From COO Daphne Dumbrille, HAE Canada Organizations across the globe have adjusted and regrouped due to the COVID-19 pandemic, and HAE Canada is no exception. It is hard to believe we are in the [...]
News from Australia and New Zealand
From CEO Fiona Wardman, HAE Australasia HAE Australasia Youth Group is up and running, and the group facilitator Jess has done a great job in connecting some of our youth from Australia and New [...]
News from Belarus
For hae day :-) 2020 the National Library of Belarus in Minsk was illuminated with the awareness day logo. The library is the main information and cultural center of the country as its depository [...]
News from USA
From Ianice Viel, Patient Advocate/Social Media Manager, US HAEA COVID-19 webinars and Webinar Briefs: In light of the COVID-19 pandemic, the US HAEA has been offering a series of webinars presenting information on the [...]
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