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2023 International Rare Disease Day: Supporting Rare Disease Families with Love and Expertise

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  • Modify Date:Modify Date:2023/08/10
  • Publish Date:Publish Date:2023/04/12

  The last day of February is International Rare Disease Day, a special day in a unique month, symbolizing the special significance of rare diseases. Initiated by the European Organization for Rare Diseases (EURORDIS), this year's theme focuses on equality, with the intention of creating an equitable and accessible healthcare environment for rare disease patients in light of the fact that rare disease patients are more likely to experience healthcare inequality, misdiagnosis, and isolation. Taiwan has been strengthening its care for rare disease patients since the implementation of the " Rare Disease and Orphan Drug Act " in 2000, becoming the fifth country in the world to provide legislative protection for rare diseases. As the number of announced rare disease types and patients increases yearly, the efforts in integrating medical and social resources, support service systems, and the general public for a professional and caring environment for rare diseases have become an indispensable part of implementing the Act.

A rare disease care service network based on government and private sector collaboration 

  Since December 2017, the Health Promotion Administration has partnered with medical institutions to implement the "Rare Disease Care Program." To date, it has cooperated with 13 hospitals across Taiwan, establishing accessible and interdisciplinary rare disease care service teams in the north, central, south, and eastern regions of Taiwan. With the consent of the patient or their legal representative, the teams provide services to rare disease patients and their families. The core care services include care consultation, explanation of disease impact on everyday life, psychological support, and fertility care. The teams also help connect patients with National Health Insurance home-based medical care, long-term care services, social welfare, and patient support groups, creating an active, accessible, and professional care network to alleviate the physical and emotional stress on rare disease families. As of January 2023, over 7,000 rare disease families have received the relevant services.

Supporting rare disease families in remote areas and opening the door to happiness 

  A little girl named Ai, who lives in a remote area of eastern Taiwan, was diagnosed with a rare amino acid metabolic disorder at birth. Her parents' joy was immediately replaced by despair, questioning "why did it happen to my child?" Upon receiving the case, the eastern region's rare disease care team promptly activated the care mechanism and connected the appropriate medical and social welfare resources that, greatly reduced the family's anxiety. As Ai grew, the care plan was also adjusted accordingly, and volunteer accompaniment service as well as a variety of outings and patient activities were arranged. This provided relief to Ai's father, who is also her full-time caregiver, and helped him feel the support from fellow patients. Ai is now five years old, and her parents are grateful for the care and companionship the rare disease care team provides.

  Another patient, Mr. Huang, who lives on an offshore island, shares a similar experience. At the age of 16, he was diagnosed with Charcot-Marie-Tooth disease, a condition that gradually causes loss of function in the hands and feet due to degeneration of peripheral nerves. The Kao-Ping region’s care team responsible for his care provided telephone support and accompanied him during regular check-ups. They also conducted annual home visits to assess his rehabilitation and medication. In collaboration with community pharmacists, they provided medication assistance and care nearby, ensuring the quality of care was not compromised by transportation and distance. After graduating last year, the care team helped Mr. Huang connect with local employment resources, develop a customized vocational training plan, and find suitable job opportunities. As Mr. Huang transitioned from a student to a fresh graduate, the rare disease care team continued to provide practical help and psychological support.

With the dedication of the care teams for families with rare diseases, we call for public participation 

  The Director General of the Health Promotion Administration, Dr. Chao-Chun Wu, stated that the treatment and care of rare diseases is a long-term and lifelong process. He expressed his gratitude to the members of the rare disease care teams for their dedication and passion for rare disease patients and families. To make the rare disease care network more comprehensive, on the eve of International Rare Disease Day, Director General Wu called on civil organizations and the general public to join and support rare disease families. “By sharing a word of encouragement or a gesture, we can help patients and families to feel the warmth of our society,” he added. It is hoped that the positive energy of supporting rare diseases will continue to spread, becoming a powerful source of support for rare disease families.