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Celebrating International Rare Disease Day - Colorful life stories of rare disease patients

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  • Modify Date:Modify Date:2022/03/28
  • Publish Date:Publish Date:2022/03/28
In 2008, the European Organization for Rare Diseases (EURORDIS) established the last day of February as the "International Rare Disease Day". February, having the “rarest” number of days, symbolizes the meaning of rare in rare diseases and jointly calls on all walks of life to pay attention to rare diseases. Moreover, the day encourages rare disease patients to actively share their life stories, so that the society at large can better understand rare disease patients, rare disease families, and their caregivers to help patients break through the barriers of care, diagnosis, and treatment, as well as provide a more equitable and inclusive environment for a brighter future.

Joint force in the awareness and support of building a rare disease care network

Due to the low prevalence of rare diseases and the small number of patients, the diagnosis, treatment, and drug development of rare diseases are difficult. With limited treatment methods and difficulty finding a cure, rare disease patients face many hardships in their search for survival and medical treatment. As early as the year 2000, Taiwan promulgated “The Rare Disease Prevention and Orphan Drug Act” and became the 5th country in the world to enact legislation to protect patients with rare diseases. Furthermore, the government integrated social welfare, long-term care, education, and employment services to provide a full range of rare disease patient-centered services through cross-agency cooperation. In combination with civil organizations, the efforts increased public awareness of rare diseases and promoted a caring atmosphere that became the support network for rare diseases in the country.

The hotline that can improve quality of life for rare disease families

Through the warm and caring rare disease care network, rare disease patients and their families have benefited substantially and changed their lives. One example is Mrs. Zou’s (not her real name) twin sons, both of whom have Duchenne muscular dystrophy. This rare disease weakens the muscles of the whole body to the point that only the ends of the hands and feet can move in the late stages. For years, she stayed home to take care of her sons day in and day out. Then when they turned 20 years old, they were hospitalized with tracheotomy from a pneumonia attack. After the two young men returned home, the medical equipment and supplies needed such as respirators, blood oxygen monitors, and oxygen generators became a staggering expense for the family. The Zou family is an ordinary working-class family, with Mr. Zou being the sole earner, and the enormous medical expenses of their two sons put the whole family in despair. Thanks to the enthusiastic help from the hospital staff, Mrs. Zou was able to apply for the subsidies under the "Rare Disease Prevention and Orphan Drug Act" that covers the rental expenses of the rare disease home care equipment not covered by the national health insurance. She gratefully recalled that when her application for the subsidies was approved, she was able to reduce her home care expenses under NTD10,000 per month, giving her and her family breathing room financially. As Mrs. Zou's family situation meets all relevant government subsidy requirements, now she can freely hire caregivers to assist in caring for her two sons, which indirectly improves her family's quality of life. The Zou family is a true portrayal of the situation with many rare disease families. Families with the same experience as Mrs. Zou can learn more about the subsidies with the one-stop consultation hotline for rare disease medical subsidies (hotline: 02-2545-9066). A dedicated specialist will provide information on government subsidies and related assistance.

Giving hope and support to those in the journey of overcoming rare disease

The implementation of the Rare Disease Prevention and Orphan Drug Act has provided support to rare disease patients and their families for more than 20 years. As of January 2022, the government has announced 235 rare diseases covered under the Act, in which more than 19,000 rare disease patients are accounted for in the same period. It takes a lot of courage and perseverance to live with rare diseases beyond the imagination of ordinary people. Therefore, as the International Rare Disease Day on February 28 approaches, it is hoped that the public would join hands in support of caring the patients and their families with enthusiasm and action, overcoming the setbacks and challenges to usher in a new life.