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Families caring for children with rare diseases face a challenging journey that requires long-term commitment. To recognize and support these families, on August 2, TFRD organized a celebration and advocacy event for rare disease care at Tainan Chi Mei Medical Center. The event featured a performance by the Heavenly Melody Choir from the Southern District. Additionally, various counseling stations and activity areas were set up at the venue.

What makes this performance unique is that five of the songs were composed by members of the choir. For numerous families dealing with rare diseases, music serves as an essential source of positive energy that accompanies them in their battle against the illness. The members aspire to utilize their songs and stories to disseminate this positive energy.

We express our gratitude to Chi Mei Medical Center in Tainan for extending an invitation to the choir to perform, allowing them to share the song of life and inspire others with love and courage, rather than solely receiving assistance. During this event, Professor Lin Hsiu-Chuan from the Genetic Counseling Center generously made a donation to TFRD, aiming to contribute to the protection of families affected by rare diseases.

Translator: David Lee (Becker Muscular Dystrophy)