From Soojin Min, HAE Korea

Start of Welfare for the Weak! National Assembly Debate to Improve the Quality of Life of Patients with Rare Diseases in Medical Blind Spots: On Tuesday, 12 September, The Korean Society of Genetic Angioma held a policy discussion at the National Assembly Hall in Korea to find ways to support rare disease patients. Park Kyung-ja, Hwan-woo attended as a debater and announced the patient’s difficulties, and Min Soo-jin, CEO of HAE KOREA, presented his opinion to introduce preventive drugs. Korea is making continuous efforts to introduce preventive treatments because the only emergency treatment available is ‘Firazyr.’

HAE KOREA Patients Increase and Patient Friendship Membership Increase: We now have about 200 confirmed patients in Korea, and the 9 members at the beginning of the Korea Friendship Association in 2019 has increased to 73 members of the Korea Friendship Association as of 2023. The number of members increases steadily through SNS and promotion of each hospital.

Year-end meeting: On 9 December, HAE KOREA will hold the 2nd regular general meeting and year-end meeting in 2023 near Seoul.