AADC Deficiency Patient Gathering

On Sunday, November 30, TFRD held a social gathering for individuals with AADC deficiency at the Taipei City Center for Persons with Disabilities. A total of 19 families attended, bringing together 65 participants, including 17 patients and 48 family members.

The event offered a valuable opportunity for patients and their families to meet in person, share caregiving experiences, and provide mutual support. It also helped strengthen connections among families, creating a warm and welcoming support network.

AADC deficiency is a rare genetic disorder that progressively impairs dopamine and serotonin production, leading to multiple developmental and care challenges. With the advent of gene therapy and its official inclusion in National Health Insurance coverage effective December 1st, families of patients now have renewed hope. Through this gathering, TFRD assists patient families in understanding key post-treatment care considerations while strengthening the patient community.

The event offered participants an opportunity to experience mindfulness meditation. Dr. Hu Wu-liang, inventor of the AADC gene therapy, delivered a personal presentation explaining the disease mechanism, treatment principles, and the critical need for long-term rehabilitation and care post-treatment.

Ms. Serena Wu, TFRD co-founder, shared her years of dedication to supporting gene therapy research and policy advocacy, encouraging parents not to dwell on worries but to steadfastly accompany their children forward.

Group discussions were also conducted during the event, where families who had undergone treatment and those awaiting treatment took turns sharing their caregiving experiences and personal journeys. The event concluded with heartfelt exchanges and mutual understanding, empowering families to move forward with clearer direction and a renewed sense of solidarity.

Translator: David Lee (Becker Muscular Dystrophy)