What positive changes have happened for people with HAE, in your country, from 2012 to now?
- HAE Korea Organization’s was started
- More HAE professional knowledgeable physicians.
- From September 2018, Firazyr, a treatment for HAE patients, has been approved in Korea and can be self-administered by patients.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
- HAE Korea was established in November 2019 and officially registered as a non-profit organization.
- There is Firazyr Therapy and also HAE Korea so HAE patients interact with each other more. This helps reduce pain, loneliness and improves our 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?
- Practical support from pharmaceutical companies and welfare foundations has helped us to organize HAE Korea.
- Regular workshops with active members of the HAE Korea Friendship Association (scheduled quarterly)
- HAE promotional activities and awareness of HAE through HAE story and HAE day in various media.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
- HAEi helped HAE Korea start and actively supported human and physical resources to form an organization.
- Attend local workshops and HAE global conferences, and help HAE Korea to be officially recognized through the HAEi website.
- We thank HAEi for their active support.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
- Firazyr is the only HAE treatment in Korea. In response, Korea will make efforts to introduce additional anti-disease drugs through our activities.
- The organization will be activated as an official non-profit corporation through active discovery and socialization of HAE Korea.
- Preparation to increase the diagnosis rate of HAE in Korea, which is lower than global level
- Proactively promote and raise awareness of HAE in Korea so that there are no patients suffering from undiagnosed or untreated HAE disease.
- Patient training to enhance HAE symptoms and awareness
- Training and promotion of HAE to medical staff to help accurate diagnosis .
Put the safety of HAE patients first and minimize mental stress for the health of the mind and body.
We can overcome the COVID-19 virus and conquer HAE!