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24 march 2020: Infomation about COVID-19 and angioedema
Dear HAEi Friends,
The health and well-being of our global community is HAEi’s top priority. With that in mind, we asked our medical experts to provide their best thinking regarding the COVID-19 virus health risks that might be faced by people who have hereditary angioedema and other forms of recurrent angioedema.
COVID-19 is a new virus and the medical community has very little experience in relation to hereditary angioedema and other forms of recurrent angioedema. Nevertheless, our expert physicians have told us that having HAE (types I/II or normal C1 inhibitor) or other forms or recurrent angioedema does NOT increase:
The risk of being infected with COVID-19, nor
The severity of infection if the virus is contracted.
Furthermore, infections of any type may be a trigger for attacks, so it is important to make sure medications are taken as prescribed and that prescriptions are kept current.
It is also important that everyone considers other non-HAE health conditions that may be specific risk factors of COVID-19.
Please follow instructions from governmental and local health authorities which includes frequent hand washing, social distancing, and avoiding travel.
We recommend that you contact your HAE physician if you have specific questions.
Take good care of yourself and your family, and stay safe!
With warm regards,
Your HAEi Team
7 June 2019: New record in raising awareness step by step
HAE International extends a very warm thank you to each and everyone who took part in the HAE Global Walk from 1 April to 31 May 2019 – once more proving that this is a truly worldwide HAE event.
“First launched in 2016 the HAE Global Walk registered more than 12,000,000 steps. In 2017 the number grew to more than 21,000,000. In 2018 we rose to over 54,000,000 steps. And for 2019 we have registered nothing less than a massive increase to 90,189,232 steps”, says HAE International Executive Vice President & Chief Operating Officer Henrik Balle Boysen.
For those interested in the national scores, here you have the first 10 countries walked for:
North Macedonia (14,000,000+)
United Kingdom (5,000,000+)
– followed by Austria, Australia, Netherlands, and Australia (all 2,000,000+) and then Peru, Slovakia, Sweden, Croatia, Mexico, Jordan, Montenegro, Norway, Venezuela, Switzerland, and Belgium.
Furthermore, one or more entries have been made for Bulgaria, China, Colombia, Egypt, France, Hungary, Ireland, Italy, Kenya, New Zealand, Poland, Russian Federation, Turkey, and the United Arab Emirates.
“We will be back with the 2020 version of the HAE Global Walk in the months leading up to the 2020 HAE Global Conference in Frankfurt, Germany. And once again our motto will be: Every step counts”, says Henrik Balle Boysen.
15 May 2019: Eighth global awareness day for HAE
HAEi was very excited to hold the global awareness hae day :-) in 2012, 2013, 2014, 2015, 2016, 2017, and 2018 as it provided HAE organizations and patients around the globe with great opportunities to raise awareness of HAE.
On 16 May 2019, the eighth global hae day :-) will raise even more awareness of HAE among the general public and medical community, with the aim of creating an environment with better care, earlier and more accurate diagnosis, and knowledge that HAE patients can lead a healthy life.
The hae day :-) has been initiated by HAEi, but will never be a full success without the support of the steadily growing number of national HAE organizations throughout the world.
25 April 2019: Pilgrims help raise HAE awareness
Following the successful planning and execution of the HAEi/AEDAF Camino Walk events in northwestern Spain in 2016 and 2017 as well as the HAEi Jakobsweg Walk in Vienna, Austria in 2018 HAEi has once more teamed up with the Spanish organization AEDAF for the third Camino Walk in Spain.
“We had hoped to be able to attract around 30 participants, but in the end, almost 50 HAE pilgrims signed up for the 2019 edition of the HAEi/AEDAF Camino Walk. Once more people will be coming from four continents as we cover Spain, the USA, Italy, Denmark, Hungary, South Africa, Chile, and Norway”, says Steen Bjerre from the organizing team.
The pilgrims will be meeting in Madrid Airport on the morning of Wednesday 15 May 2019 from where a bus will take them some 600 km to El Ferrol.
“The first stage is appropriately coinciding with hae day :-) this year as we will start Thursday morning and walk some 15 km from Neda to Puentedeume. The following day we will walk from Puentedeume to Betanzos – that is around 15 km as well. Finally, Saturday morning the third and final stage will be taking us the approximately 14 km from Sigüeiro to Santiago de Compostela”, says Steen Bjerre.
The participants will round off the HAEi/AEDAF Camino Walk 2019 by taking part in the pilgrim’s mass at the cathedral in Santiago de Compostela before the bus brings them back to Madrid.
You can follow the Camino Walk on a number of social media: