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 week, since March 2020. In-person school is therefore likely to be a distant memory. On top of that, COVID-19 related [...]
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 (21) to ask them about how their participation on the HAE Scandinavia board will bring an important perspective to the [...]
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 in as many languages as needed to accommodate the entire community. The app is now available in Arabic, Brazilian Portuguese, [...]
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 for member organizations that offers training on how to start and build an HAE organization, and best use HAEi’s tools [...]
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 equivalent and more affordable version of Firazyr that will now be made more accessible to patients world-wide. The product is [...]
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 conditions such as immunodeficiency disorders, hemophilia, and HAE. Plasma is a core substance within our blood and carries important cells, [...]
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 HAE. NTLA-2002 is a systemically administered single-dose CRISPR/Cas9-based therapeutic candidate designed to inactivate the target gene Kallikrein B1 (KLKB1) to [...]
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 haei.org. The information about the countries, from past to present and looking ahead towards the next ten years is both [...]
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 working with the Regional Patient Advocate for Central Eastern Europe, Benelux, and the Middle East on the new website for [...]
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 would like to share with you some wonderful news about the situation of HAE patients in my home country, Poland. [...]
