What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes for people with HAE in South Africa occurred when a patient group was formed in 2016.Before that individual patients had never met others with HAE.
This opened the way for improved knowledge of the condition itself and the medications that have been developed.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement is that increased knowledge has led to individual patients becoming confident in managing their own health. There is now a heightened awareness of the fact that they need to stive for better access to modern medication.
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 activity we are most proud of is having the HAEi Youngsters take up the program that we had instigated to highlight the entry point for HAE to pre-adolescent patients to establish responsible permanent patient responsibility.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We have used all of these resources from HAEi and have found them invaluable.
- 6 Members attended the Global Conference in Vienna in 2018.
- One of our members attended the Youth Workshop in Atlanta and is doing sterling work on the advisory groups for the HAEi Youngsters community
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
We want to achieve an improved response from the medical sector in better understanding HAE and ensuring that modern medication becomes available as a matter of priority.