From Regional Patient Advocate Fernanda De Oliveira Martins
I keep encouraging leaders from the member organizations in my region to follow the HAEi Advocacy Academy exclusive courses – lately, I have been sending them information on course updates.
I have supported Carla María Goachet Boulanger, President of HAE Peru, with some points regarding the children’s storybook they are developing. In addition, Lisa Facciolla from US HAEA has shared the Spanish version of Brady Club, and I have shared this ready-to-use material with the member organizations and encouraged them to use it with children in their countries. Also, I have sent the member organizations the Brady Club coloring page for the Christmas season.
I have supported HAE Peru and HAE Brazil (ABRANGHE) regarding some technical issues and updates in HAEi Connect. Also, we have provided HAE Peru with an emergency room poster translated into Spanish and with the organization’s logo.
Dr. Calderón from Peru has been looking to provide better support to children and pregnant HAE patients. I have put him in contact with CSL for possible opportunities.
I have replied to two patients from Mexico and one from Chile seeking local HAE support. They came in contact with me via HAEi and US HAEA.
On 23-24 November 2021, I attended a virtual Takeda workshop titled “Amplifying the voice of the patients”.
Also, I have been discussing with Chief Regional Patient Advocate Fiona Wardman and President Sandra Agustina Nieto-Martinez of HAE Mexico about applying the Burden of Illness survey in Mexico.
Finally, I would like to mention the Instagram account for my region – please see postings at www.instagram.com/haei_sudamerica_y_mexico.
