From Regional Patient Advocate Maria Ferron
The 2022 HAEi Global Leadership Workshop held in October was an excellent chance for everyone to share their experiences, see all the new projects and activities HAEi has implemented, and meet face-to-face with the HAE community and stakeholders. The workshop gave the Member Organizations in the region I am dealing with the time to learn more and think about the next steps to take in the coming months. Here are some examples of the workshop outcome:
- Algeria took an interest in enrolling in one of the scientific-based research that HAEi conducts to provide data to Member Organizations that can be used in their advocacy efforts. They will also be investigating with their scientific committee the infrastructure and local regulations for pharmaceutical companies to do clinical trials.
- Spain and France will start using the HAEi project management team as the only channel to conduct market research and surveys in the country; and they will be using the new HAEi “Understanding HAE” patient guide as a source of information for their members.
- Morocco has shown interest in enrolling in one of the scientific-based research that HAEi conducts and in HAEi Connect.
- Portugal wanted to learn more about managing their website hosted under HAEi fully, so we set up a call with the operations teams to provide them with more information. They will also investigate with their doctor lead the infrastructure and local regulations for pharmaceutical companies to do clinical trials.
I am happy to announce that Ruconest is now available in Morocco, but at this point, with no reimbursement. A meeting took place in Casablanca to introduce the new treatment and the association with the distributor, Laprophan, and Pharming’s sponsorship.
And finally, I would like to announce that HAE Spain (AEDAF) is planning next year’s hae day :-) activity. >> You can find more information on this here.
