NEWS
Five back-to-school tips for the new school year
Getting back to school year routine is always a challenge after enjoying the summer months. However, for many, this fall will be the first time back in school for full days, five days a [...]
HAEi Youngsters. Connected by HAE. United as a Family.
Two of the HAEi Youngsters Community members have recently joined the Board of their national member organization, HAE Scandinavia. Nevena Tsutsumanova, HAEi’s Operations Manager, had a Zoom sit down with Nanna (20) and Victoria [...]
HAE TrackR available in 13 languages and counting
HAE TrackR is HAEi’s proprietary app, designed by and for patients, that provides a user-friendly platform for recording attacks, treatments, emergency room visits, and more. The objective has always been to provide HAE TrackR [...]
New HAEi Advocacy Academy courses now available for the HAEi Community
HAEi’s popular, free, online, cloud-based virtual training platform has been expanded to include a range of new educational modules on advocacy, disease related information, and HAEi resources. HAEi has also added an area exclusively [...]
Adalvo announces successful DCP closure for Icatibant
Adalvo is pleased to announce the successful closure on the DCP procedure for our Icatibant development, a complex injectable peptide product, forming part of our high-value product portfolio offering to our partners. Icatibant is an [...]
Plasma can help those with life-threatening diseases
Plasma helps your body fight diseases, and it deserves greater recognition. Ask people who have certain rare and chronic complex diseases – they will tell you that therapies made from donated plasma help them manage [...]
Intellia authorized to initiate Phase 1/2 clinical trial of NTLA-2002
Intellia Therapeutics, Inc.'s Clinical Trial Application (CTA) has been authorized by the New Zealand Medicines and Medical Devices Safety Authority (MEDSAFE) to initiate a Phase 1/2 study evaluating NTLA-2002 for the treatment of adults with [...]
News from Nordics, Germany, Austria and Switzerland
After an amazing and successful hae day :-) with lots of activities from HAE patients, caregivers, health care professionals and industry, it continues to be wonderful reading about all the countries that participated on [...]
News from Mediterranean, North Africa and British Isles
Over the past couple of months, work has progressed on the HAEi Virtual Workshop for the Middle East, North Africa, and Sub Sahara Africa. We have finalized the video recordings, and I have been [...]
News from Central Eastern Europe, Benelux and Middle East
I am so happy to catch up with you again and share what happened over June, July, and August. It has been a hectic period, full of advocacy activities and crucial successes. First, I [...]
News from Sub Sahara Africa
A team of doctors dedicated to raising awareness in Zimbabwe have opened a Facebook page to share more information with the public and fellow health care professionals. They have invited patients and caregivers to [...]
News from Central America and Caribbean
For several months, HAE patients in Costa Rica have conducted interviews with the media to denounce the situation they are experiencing as the Government has not heard their claims. Several patients have been hospitalized [...]
News from South America and Mexico
I have been in contact with Lisa Facciolla from HAEA regarding the Brady Club. I’ve reached out to the member organizations in my region asking who are interested in receiving the kids’ material in [...]
News from Asia Pacific
Happy birthday to HAE Hong Kong! Congratulations to the team at HAE Hong Kong for their 2nd year of dedication to improving the quality of life for patients in Hong Kong. During the last [...]
News from South Eastern Europe
I have informed the patient representatives in my region about the HAE TrackR app and sent them the files for translation. So far, we have the app translated into Serbian and Turkish – and [...]
New treatment option supplied in prefilled syringes
Cycle Pharmaceuticals launces Sajazir (icatibant) Injection, a new treatment option for patients affected by HAE approved by the US Food and Drug Administration (FDA). Sajazir is a bradykinin B2 receptor antagonist indicated for treatment of acute [...]
Preclinical data demonstrates utility of RNA Actuating Platform
CAMP4 Therapeutics presents preclinical data demonstrating the utility of its RNA Actuating Platform (RAP) and the therapeutic potential of oligonucleotide-mediated gene upregulation targeting a new class of RNA known as regulatory RNAs (“regRNAs”). The data [...]
UK National Institute for Health and Care Excellence recommends Orladeyo
The United Kingdom National Institute for Health and Care Excellence (NICE) recommends Orladeyo (berotralstat) for preventing recurrent attacks of HAE in eligible patients 12 years and older if they have at least two attacks per [...]
FDA lifts clinical hold for Phase 2 Trial of KVD824
The U.S. Food and Drug Administration (FDA) has lifted the clinical hold on KalVista Pharmaceuticals, Inc.'s Phase 2 clinical trial of KVD824 for oral prophylactic treatment of HAE. “The execution of Komplete, our Phase 2 [...]
Results from clinical trials for COVID-19 treatment with Ruconest
Pharming Group N.V. announces the topline results from two randomized, open label, controlled, pilot clinical trials of patients hospitalized with COVID-19 treated with Ruconest (recombinant human C1 inhibitor) for the prevention of severe SARS-CoV-2 infection. [...]
Launch of dedicated support platform for rare disease patients
Cycle Pharmaceuticals has launched Cycle Vita, a support platform for rare disease patients. The platform provides a vast range of high-quality support programs to both healthcare providers and rare disease patients across the United States, who [...]
Important advancement for HAE patients in the United Arab Emirates
The Ministry of Health and Prevention in the United Arab Emirates has granted marketing authorization for oral, once-daily Orladeyo (berotralstat) for the prevention of recurrent attacks in patients with HAE 12 years and older. To support [...]
KalVista advances two compounds
At the presentation of KalVista Pharmaceuticals, Inc.'s financial results for the first fiscal quarter ended 31 July 2021, CEO Andrew Crockett says: “We have made excellent progress in the rollout of our Phase 2 Komplete [...]
Catabasis becomes Astria
Catabasis Pharmaceuticals, Inc. announces a new company name, Astria Therapeutics, Inc. The name Astria originates from the Greek word for star, reflecting the Company’s commitment to having patients serve as guiding stars. Astria’s mission is [...]
Orladeyo accepted for review in Canada and Switzerland
BioCryst Pharmaceuticals, Inc.'s new drug submission for Orladeyo (berotralstat) has been accepted for review by Health Canada for the prevention of recurrent attacks in patients with HAE 12 years and older. Swissmedic has also accepted [...]
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