UTSDGs

The good cycle of "You and I share the same good" - Sustainable community advocacy, care and site management - 113th Annual Taipei City University Social Responsibility Practice USR Program Training Event - Hsinchu Kansai Rare Disease Home

On April 27 (Saturday), teachers, students and classmates of the project team visited the Rare Disease Home in Guanxi Township, Hsinchu County. The Rare Disease Home is an organization that specializes in caring for and accompanying people with rare diseases. When the planning team arrived at the home, they were deeply moved by the environment and atmosphere of the home. Although this is not a large hospital, the entire campus looks very warm and comfortable. First, CEO Guanru introduced the Hsinchu Kansai Rare Disease Home to the participating teachers, students and project team. It is an organization dedicated to supporting and caring for rare disease patients and their families. It is a community that brings together disease patients, family members and volunteers. group, which provides support and resources to help patients and their families cope with the challenges of rare diseases. Hsinchu Kansai Rare Disease Home is committed to providing emotional support, information sharing and medical resources. CEO Guanru said that it will hold regular gatherings, workshops and activities to give patients and their families the opportunity to exchange experiences, build a support network, and Learn skills and knowledge about coping with illness. In addition, lectures by medical experts will be held to provide the latest medical information and treatment advances. development to help patients better understand and cope with their disease. In addition to emotional and medical support, Hsinchu Kansai Rare Disease Home also actively strives for public attention and government support. CEO Guanru also shared that in the past, the disease home’s publicity perspective was based on tragedy, but now it will change to a dynamic, optimistic and positive perspective. In the past, the donation method was large donations from entrepreneurs, but now more and more enthusiastic people make small donations through electronic payment. Therefore, the Rare Disease Home will hold publicity activities and participate in community activities to raise awareness of rare diseases and promote policy formulation. and resource allocation to improve patients’ quality of life and medical care,CEO Guanru hopes to continue to provide services to patients with rare diseases and Their families have provided valuable support and resources, helping them feel warmth and care when facing difficulties, and promoting their awareness and understanding of rare diseases. They also shared with us the psychological therapy package courses currently planned for the program. , you can add small things that can immediately cheer up the patients or their families. Maybe this psychological therapy package will have great bonus points. Teachers, students and planning teams of follow-up courses also participated in blessing handcraft courses - sewing osmanthus-wrapped rice dumplings, happiness baking courses - salted butter rolls, rare disease home tour courses (Time Corridor, Gene Education Center), and rare disease experience Courses (well-being demonstration and education center, healing gardens, osmanthus trails) and other related activities, course teachers, students and planning teams visited rare disease experts after Yuanji deeply feels that this home is not only a treatment base, but also a community full of love and hope. The staff not only provide professional medical services, but more importantly, give patients warmth and care, making them feel the warmth of home. Listening to their stories makes us deeply appreciate the fragility and preciousness of life, and also makes us aware of the challenges and needs faced by patients with rare diseases. This visit to the Rare Disease Home in Guanxi Town, Hsinchu County deeply touched the participating voices and planning teams. We not only learned about the living conditions of patients with rare diseases, but also felt the selfless dedication of the staff and the residents. We hope to continue to pay attention to and support this home and provide them with more help and care.

Implemented by Center for Teaching and Learning Development
Date: 2024/04/27