This input is dated May 2021
In brief
- Name for organization: HAE Indonesia
- 1 member at 1 Jan 2021
- Name of approved HAE treatments: n/a
Fun/interesting facts
- Indonesia has the world’s largest flower called ‘Rafflesia Arnoldi’. It weighs up to 7 kg (15 pounds) and only grows on the island of Sumatra, Indonesia. The flowers petals grow to 0.5 meters (1.6 feet) long and 2.5 cm (1 inch) thick.
- Indonesia is the largest archipelago in the world with more than 18,000 islands.
- Indonesia has around 127 active volcanoes and the world’s largest volcanic lake.
What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive change that has happened for HAE in Indonesia is that there is a patient group.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
There have not been any big achievements as yet because it is difficult to find other patients and doctors who understand about HAE.
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?
At this stage there hasn’t been any resources, events or activities for people with HAE, but we hope to do things in the future.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
- HAEi has provided HAE Indonesia with a website and hosting.
- I am working with my RPA to find doctors in Indonesia, who we can then work with on awareness and education of HAE.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
The next step is to find more patients and build the capacity of the patient group so we can create more awareness of HAE. Patients to get the right diagnosis and modern HAE treatments.
