What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have occurred for people with HAE are: better knowledge of HAE; a faster time to diagnosis of HAE, a network of specialist doctors, approved drugs.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest gains for people with HAE are: guidance, acceptance, access to treatment and improvement in quality of life.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
The resources or events that make us most proud are the meetings with doctors, patients and family, especially those related to hae day :-), and the individual and personal assistance for guidance and acceptance of people with HAE.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We have had a lot of support from HAEi, with information, material with content and guidance. HAEi’s support for our participation in Global Conferences is essential and allows us to learn, exchange experiences and connect with other groups of patients. In addition, we recently had the support of HAEi with the organization of a meeting focused on our region.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
For 2030 we want: greater involvement of patients with the association, to find all patients with HAE based on the prevalence in Brazil, better quality of life with access to oral drugs for attack control and a possible genetic modification of the defective gene.