December 15, 2023

Highlights of the 12th China Rare Disease Summit in Changsha

Jessie and her team participated in the 12th China Rare Disease Summit held in Changsha, China, in September. The conference brought together stakeholders from both international and national levels to discuss rare diseases. A particularly noteworthy session was dedicated to rare disease patient organisations, aiming to shed light on specific diseases and raise awareness.

To vividly depict primary immunodeficiency, commonly associated with the “bubble boy,” we opted to recreate the life circumstances of such individuals. A lifelike baby doll was chosen and placed inside a transparent enclosure to simulate the conditions of primary immunodeficiency. During the presentation at the conference, this exhibit garnered significant attention. Jessie took the opportunity to introduce primary immunodeficiency, highlighting the current shortage of immunoglobulin and encouraging attendees to support a petition. The petition aimed to draw attention to the medication challenges faced by primary immunodeficiency patients, with the hope that increased awareness and advocacy could lead to improvements.

Throughout the conference, Jessie was interviewed by the China Rare Disease Centre and was invited to engage in discussions with China’s National Medical Products Administration. These interactions aimed to provide insights into the lives of rare disease patients, specifically those with primary immunodeficiency. By sharing perspectives during interviews, Jessie expressed the expectations of patients and the hope for increased care and attention at the national level. The goal was to enhance the quality of life for primary immunodeficiency patients in China.