From Regional Patient Advocate Fernanda De Oliveira Martins
We have all been excited looking forward to the Global Leadership Workshop in Frankfurt, Germany. The idea of bringing the leaders/board members of the HAE community together in a face-to-face meeting after so much time apart has added extra energy to our region. During the months leading up to the workshop, I have supported the Member Organizations with their questions related to the event. Furthermore, we collected and updated data from the countries in my region, so we had good information to work with during the workshop.
As a result of great teamwork, in September, we launched the Burden of Illness survey in Mexico, which is tailor-made for the country. If you are from Mexico and have received the invitation, please join the survey and help us understand how the disease impacts the lives of Mexicans with HAE.
We welcome the announcement that Pint Pharma has closed an agreement with BioCryst to make new therapeutic alternatives available to HAE patients in Latin American countries, particularly Berotralstat (ORLADEYO). We look forward to seeing more treatment options in our region.
I have been promoting the HAEi Advocacy Academy courses among the Member Organization leaders. We invite everyone to join the HAEi Advocacy Academy and do the open courses.
The US HAEA develops amazing activity books for the HAE children’s community. Since they have also made it available in Spanish, our region can benefit from this great material. Most recently, I have sent the Member Organizations the 2022 fall edition of Brady Club, kindly shared with me by US HAEA so the children in our region can enjoy it.
We have been using the Instagram channel to amplify activities done by countries in the region and communicate about HAE.
