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 [...]
This input is dated May 2021 >> View content in Español In brief Name for organization: Spanish HAE Association (AEDAF) 416 members at 1 Jan 2021 Name of approved HAE treatments: Berinert 500 (IV) Berinert 2000 (SC) Cinryze Firazyr Takhzyro Fun/interesting facts The city of Santiago de [...]
From President Sarah Smith, AEDAF: For the 10th anniversary of hae day :-), in addition to taking part in the virtual walk around the globe, AEDAF, with the collaboration of Takeda, has produced a documentary titled “Impredecibles” which premiered on 16 May. The protagonists of the documentary are three members of AEDAF, real patients [...]
During March, the World Allergy Organization (WAO) and the Pan-Arab Society of Allergy, Asthma, and Immunology (PASAAI) organized the WAO Pan Arab Region Virtual Congress with several sessions, including one for HAE. Professor Douagui from Algeria invited me to join the HAE session named “HAE: Identifying & Managing a Potential Killer” that included these [...]
From President Sarah Smith, HAE Spain (AEDAF) Activities: We do not plan to hold any face-to-face events in 2021 due to the ongoing pandemic. We are involved in various activities, including a documentary for hae day :-) 2021, informative online training courses and programs, a burden of illness survey, etc. We also plan to [...]
From Regional Patient Advocate Maria Ferron Mauritania: Our new HAE International Poster has been sent for translation to the only contact we currently have in the country. This poster can be quite helpful to localize possible HAE patients as we are not in contact with any yet. Spain: HAE Spain (AEDAF) had their annual [...]
From Regional Patient Advocate Maria Ferron The ACARE Center initiative has been presented to all the countries in the region, and it has been well received. We already have ACARE Centers set up in the United Kingdom, France, Spain, and Portugal and I am expecting that more will be settled by the end of [...]
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 as of mid-March due to Covid-19, AEDAF did decide to carry on with the project it had planned for hae [...]
From Regional Patient Advocate Maria Ferron I have been involved with meetings and follow up in Spain with pharmaceutical companies regarding access to HAE treatments. The 22nd General Assembly and Annual Meeting of HAE Spain (AEDAF) was set to take place on 18 April 2020 in La Paz Hospital Madrid. However, due to the COVID-19 [...]
From Regional Patient Advocate Maria Ferron During the last few months, my focus has been on the organizing of the 2020 HAEi Regional Workshop North Africa in Algeria, on 6-8 March. This meeting brought together patients, families, and physicians from Libya, Tunisia, Mauritania, Morocco, and Algeria for the first time. The agenda included a scientific [...]
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
HAE International (HAEi)
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HAE International (HAEi)
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