From Regional Patient Advocate Javier Santana

During the month of December, we are hosting another webinar in Spanish with Dr. Rafael Zaragoza on HAE and COVID-19 in order to update the HAE community from the region on the latest medical information. We expect this event will be well attended.

We are also excited that the new patient group from the Dominican Republic already has its website up and running and that the leaders are working hard to identify more patients in their country and educate doctors on HAE.

Additionally, HAE Costa Rica has identified a new patient who is proving to be an invaluable resource. Diana Madrigal Fernández is a marketing specialist with strong media relations and has offered to develop a communications plan for the group. She will also support national contact Angie Leiton in the development of an action plan focusing on high-level government advocacy.

Finally, HAE Panama has joined a coalition of rare disease organizations to create a new working group called “RedER Panama”. The intention is to promote live discussions on social networks about different rare diseases in Panama during the COVID-19 lockdown. The group has already rolled out several digital media campaigns such as: “Cultivate your Rarity”, and “I am Different, but I am not absent”. They have also held live events on social media platforms featuring doctors specializing in rare diseases so that the community can ask them questions about the diseases.

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