A Dream Home for Rare Disease Families
Since its establishment in 1999, TFRD has been dedicated to the advocacy for the access to orphan drugs and the prevention of rare diseases (RD), while actively championing patients' rights. In response to the diverse needs of RD families, TFRD has expanded its services to encompass over 30 distinct programs. Recognizing the constraints in serving a limited number of patients and their families during large-scale activities, such as patient trips, TFRD has diligently planned and lawfully applied for land changes to establish the Rare Disease Welfare Center in Guanshi Township, Hsinchu County. This center, encompassing a total area of 1.8742 hectares, is designed with farm-themed features. Our objective is to create a year-round, serene, and accessible environment that ensures the well-being of more patients.
In contrast to the predominant centralized service model adopted by most existing welfare service centers for individuals with physical and mental challenges in various counties and cities across Taiwan, Rare Disease Welfare Center offers a comprehensive, one-stop service within a spacious and natural environment. It seamlessly combines multifaceted functions, including production, recreation, healing, rehabilitation, skill development, psychological counseling, respite services, family activities, and social education. Rare Disease Welfare Center features a universally designed environment, both indoors and outdoors, ensuring accessibility for all. Rare Disease Welfare Center is tailored to serve as Taiwan's first place for families coping with rare diseases, providing holistic healing for their minds, bodies, and spirits. TFRD aims to furnish patients and their families with a sanctuary where they can unwind, access professional support from psychologists and social workers, connect with fellow patients, share life experiences, and summon the strength and resilience to confront life's challenges without having to worry about physical inconvenience and caregiving concerns.
Drawing upon TFRD's extensive firsthand-service experience, Rare Disease Welfare Center has been thoughtfully designed to cater to the specific needs of its users. By leveraging the local talent pool in the Kansai region, TFRD's services have gained added value and vitality, making them suitable for families with individuals of all ages with RD. With a track record of serving patients in Taoyuan, Hsinchu, and Miaoli, Rare Disease Welfare Center will continue to collaborate with TFRD’s Taipei head office, Taichung City branch office, and Kaohsiung City branch office to establish a more comprehensive and robust service network for rare diseases nationwide.
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