Since 2017, the Health Promotion Administration (HPA) has implemented the "Rare Disease Care Program," integrating multidisciplinary care teams to extend services from clinical settings into patients' daily lives while linking families to long-term care and social welfare resources. The program currently serves over 8,500 rare disease families, effectively alleviating their physical, psychological, and financial burdens. Recognizing that rare disease care is a long-term endeavor, the HPA urges the general public to join in establishing a comprehensive nationwide care network.

Rare Disease Care Achievement Conference Demonstrates Commitment to Multidisciplinary Care
    To ensure that rare disease patients and their families receive comprehensive medical care and social support, the HPA has implemented the "Rare Disease Care Program" for eight consecutive years. On November 25, the HPA convened the "Rare Disease Care Achievement Conference" under the theme "Collaborative Efforts to Safeguard Rare Lives, United in Sustaining Compassionate Care." The conference brought together central and local health authorities, 14 rare disease care teams, and civic organizations to demonstrate the government's achievements and commitment to advancing multidisciplinary care services.

Implementing Care Networks to Support Rare Disease Families
    Since December 2017, the HPA has partnered with private medical institutions, allocating over NT$200 million to date for the "Rare Disease Care Program." The program has established accessible, multidisciplinary rare disease care teams that, upon obtaining informed consent from patients or their legal representatives, provide integrated services centered on care consultation, disease impact counseling, psychological support, and reproductive health counseling. The teams also facilitate linkages to National Health Insurance home-based medical care, long-term care services, social welfare programs, and patient support groups, ensuring that care services extend into patients' daily lives beyond the hospital system, thereby significantly reducing their physical, psychological, and financial burdens.
    HPA Director General Ching-Fen Shen stated that rare disease care extends beyond medical treatment; it represents a prolonged journey requiring societal support. Through the establishment of a nationwide care network, the government and community can work together to provide sustained support to every rare disease family.

Diverse and Multidisciplinary Services to Enhance Quality of Life
    Currently, 13 hospitals across northern, central, southern, and eastern Taiwan participate in the program, operating 14 rare disease care teams. Each team comprises physicians, nurses, social workers, psychologists, dietitians, and pharmacists, who develop diverse service models tailored to regional characteristics and patient needs. These models include multidisciplinary care services, intra-hospital interdepartmental integration, community resource coordination, and inter-institutional care collaboration, ensuring that patients throughout Taiwan, including those in remote areas and outlying islands receive appropriate care.
    In northern Taiwan, for example, a pediatric patient with mitochondrial defect who experienced aphasia, impaired ambulation and upper extremity mobility received psychological support, rehabilitation assistance, and coordinated access to special education resource. Over time, the patient progressively regained speech and muscular strength, eventually enrolling in a special education program and commencing formal education. In central Taiwan, two patients with spinocerebellar ataxia from a rare disease family, lacking a primary caregiver at home, experienced frequent falls and related injuries, leading to physical and psychological distress. The care team coordinated community resources and arranged placement in a residential care facility with financial assistance from civic organizations, enabling the patients to receive long-term institutional care and improving their quality of life.
    In southern Taiwan, care teams apply art and music therapy to help patients alleviate stress and promote holistic well-being. They collaborate with civic organizations to fulfill the aspirations of pediatric patients with rare diseases. Through inter-institutional cooperation and partnership with community pharmacies, care services are extended to outlying islands and remote areas. In eastern Taiwan, care teams utilize telehealth support systems to coordinate with local medical institutions and physicians, delivering health consultations and care services through bidirectional videoconferencing.
    Today, all 14 teams shared their clinical experiences under the theme "transitioning from medical care into daily living, from clinical expertise to compassionate service." These ongoing efforts reflect steady progress toward person-centered, family-centered, team-based, continuous, and community-oriented care, reinforcing a comprehensive approach to supporting individuals with rare diseases.

Mobilizing Public Support to Ensure No Rare Disease Is Overlooked
    Treatment and care for rare diseases are a lifelong journey. Rare disease care teams demonstrate their commitment through action, applying their professional expertise to support every rare disease family. Director General Ching-Fen Shen further stated that although rare diseases affect relatively small patient populations, every individual deserves to be seen, supported and protected. She called on more civic organizations and the general public to participate in these efforts, collectively supporting rare disease families and fostering a supportive and inclusive environment that brings hope and encouragement into their lives. She expressed her aspiration that the efforts will continue to expand and become a substantial force supporting rare disease families.