From Regional Patient Advocate Maria Ferron
I have been advising all the member organizations in my region about the new Advocacy Academy courses developed by HAEi. This is an excellent opportunity for national organizations to take advantage of this wonderful tool to learn how to run an organization and advocate for patients. Please don’t hesitate to have a look at https://haei.org/resources/haei-advocacy-academy/.
HAE Portugal (ADAH) has been working on getting funding from the industry to print and distribute the poster developed by HAEi to support the awareness campaign that the association is working on. The HAEi poster will be distributed in hospitals and health centers. ADAH has also organized the annual patient meeting to take place virtually due to the current COVID-19 situation.
The HAE group in Tunisia is in the final stage of being an official member organization. The group is just waiting for the authorities to provide them with the accreditation that will allow them to hold their first General Assembly and patient meeting. Once everything is in place, we will start implementing all HAEi resources needed to boost the organization.
In Spain, a survey created thanks to CSL Behring’s annual EU Lead Grant Programme should be closed during this month. A survey – or rather two: one for patients and one for doctors – was created to understand the differences in access to and availability of modern HAE treatments depending on place of residence. After its closure, it will take a couple of months to perform the data analysis and preparation of the final report. This report will allow HAE Spain (AEDAF) to understand where they should focus the most and raise awareness on differences in access with the authorities so that they can make the necessary changes in local regulations.
I am thrilled to announce that the Spanish Ministry of Health has approved three so-called CSUR (Reference Centers, Services or Units of the National Health System) for HAE (children and adults). These are the first officially designated national centers of reference for HAE in Spain – please see more under the “News from member organizations around the globe” section.
