What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have happened for people with HAE in Japan are:
- HAEJ was founded in 2013
- Rapid expansion of membership
- Approval of Firazyr; first on-demand self-administered treatment
- Working with HAEi to bring the most up-to-date information regarding diagnosis and treatment to Japanese HAE patients and HAEJ members.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement for people with HAE, in Japan, from 2012 to now is:
- The founding of HAEJ in 2013 which allowed for Japanese HAE patient empowerment, and improvement of medical infrastructure for HAE patients.
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 resource, event or activity that we are most proud of organizing for people with HAE in Japan, from 2012 to now is:
- Gaining support from doctors and stakeholders to enable 14 HAE patients from Japan to attend the HAEi Washington DC Global conference. This event provided Japanese patients with an incredible vision and foundation to build capacity.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
HAEi has helped us in many areas including:
- Support in getting the organization officially recognized
- Support and sharing of know-how by HAEi members as well as the RPA
- HAEi members presenting at HAEJ meetings
- Information attained, as well as relationships built during the HAE Global Conferences
- IT support (website hosting, webinar etc)
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
Japan hopes to achieve the following by 2030:
- Building up an organization to better provide support to the patient community
- Correctly diagnosing above 80% of the theoretical patients in Japan
- Working to ensure that HAE patients have a high quality of life and not limited by their condition given the current advanced treatment environment.
- Receiving approval of self-medication for C1-INH
- Insuring treatment options are authorized in Japan for patients so that they can choose treatment that best fits their situation.