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Rare Disease and Orphan Drug Act--Achievement Summary
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Rare Disease Control and Orphan Drug Act--Achievement Summary
During the four years since the Rare Disease Control and Orphan Drug Act was implemented, the following achievements have been made:
1.The Committee for the Review of Rare Disease and Orphan Drug and a rare disease medical fee subsidy assessment group were established; 14 meetings of the Committee for the Review of Rare Disease and Orphan Drug were held; 140 kinds of rare diseases in 121 categories were recognized and announced; a list of 75 kinds of orphan drugs and their indications was announced; 40 kinds of special nutrient foods for rare disease patients and their indications were announced.
2.A single counseling window for rare diseases was established; a rare disease case reporting database was established; from August 9, 2000 to December 31, 2004, 1,762 cases were reported by hospitals.
3.An orphan drug distribution center was established and stocked with nine kinds of drugs urgently needed by rare disease patients.
4.A rare disease special nutrient food supply center was established to store and supply special nutrient foods for rare disease patients, and was granted an NT$ 14.75 million subsidy in 2004.
5.An international medical cooperation proxy laboratory testing service was established; 25 cases were subsidized in 2002, 44 in 2003 and 50 in 2004.
6.A grant system was established for rare disease prevention and control work and research projects, with six grants awarded in 2003; a grant was also awarded to the National Chung Cheng University to carry out a study on the impact of the implementation of the Rare Disease Control and Orphan Drug Act and recommendations for improvement.
7.A series of rare disease prevention and control promotional plans were implemented:
(1)Since 2001, subsidies have been provided for the production of a series of rare disease educational handouts (34 kinds);
(2)In 2002, a rare disease campus lecture tour was held;
(3)In 2003, the promotional publication Less Than 10,000 to One (Dignity for Rare Disease Patients) was completed;
(4)In 2003, a rare disease health passport was produced;
(5)In 2004, a booklet on metabolic diseases in Taiwan was completed;
(6)A subsidy was provided to the Taiwan Foundation for Rare Disorders to produce the television series Born Fighters--Life Stories of Rare Disease Patients. This series, which introduces eight rare diseases, was aired on the Public Television Service network. The series won many nominations for a Golden Bell award, and Wan Fang, the female lead in the episode on muscular dystrophy won the Best Actress award.
8.A reporting incentive plan for relevant medical personnel was implemented, with outstanding personnel and medical care institutions receiving public citations in 2003 and 2004.
9.Disability caused by rare disease was added to the disability categories in the Protection Act for the Handicapped on October 31, 2001.
10.Rare diseases announced by the DOH was added to the list of major illnesses and injuries covered by the National Health Insurance on August 30, 2002, reducing the economic burden on patients and their families.