Summary of 2020 Annual Report

In June 1999, a new social terminology emerged in Taiwan's society, where the term "Rare Disease" was previously unheard of. Taiwan Foundation for Rare Disorders (TFRD), established in 1999, has been an active force in advocating for rare disease patients in respect of medication, education, and employment, and will continue to give its best effort to light up the lives of many rare disease patients.

By the efforts of the two initiators, the founder Ms. Serena Wu and the co-founder Prof. Min-Chieh Tseng, who had kept advocating patients' rights and thus drove the society and government to pay attention to rare diseases, the “Rare Disease Prevention and Orphan Drug Act” was enacted in 2000, which enables Taiwan has better diagnosis, treatment, prevention of diseases and care of patients. Furthermore, TFRD continuously facilitates laws that categorize rare disorders as a disability. We also urge the government to include rare diseases into the NHI coverage as one of the catastrophic illnesses, allowing rare disease patients receive fully payment for orphan drugs. With our efforts, a special budget program for orphan drugs of global budget payment system was started in 2005.

To advocate the concept of disease prevention, TFRD launches “Expanded Newborn Screening Pilot Project” in 2000. The new testing technology can screen nearly 30 kinds of rare diseases by using tandem mass spectrometry, which takes only few drops of blood from a newborn baby’s heel to test. Later in 2003, TFRD further devotes the subsidies program for indigenous newborns screening. Until now, TFRD subsidies 212,411 aboriginal and low-income newborn babies for the testing fee. Therefore, TFRD is awarded “Yuen-Shu Award” by the Council of Indigenous Peoples in 2017, which represents the special contribution to indigenous people. Now, the government’s subsidy program for newborn screening has increased to 21, which leads to a better protection of the health of newborns.

In addition to policy lobbying, TFRD provides direct services in medical care, psychological care and financial support to rare disease families as well as assistance programs for schooling and employment counseling. In 2020, we serve 260 kinds of rare diseases with nearly 18,000 patients. Our direct services are divided into Service Programs and Personalized Services based on the family needs. This year, the Service Programs provide 15,559 times services about economic benefits, tube feeding dietary supplement, psychological counseling, performing workshop and micro insurance. The Personalized Services provide 8,334 times for genetic counseling, nutrition counseling, social resource management and relative medical services. TFRD also helps 355 high-risk families to get through difficult times with continuous support and care and sets up a consultation hot line which allows general public to call for advices for rare diseases questions. 

Moreover, due to the pandemic this year, many breadwinners of RD families have fallen into the predicament of furlough, layoffs, or business closures. The unexpected problems of unemployment or salary reduction have made economically-disadvantaged families even worse. TFRD immediately launched the Rare Disease Family Livelihood Assistance Subsidy Plan to provide RD families with financial stability and help them go through the hard times so that the care for RD patients will not be suspended or reduced. In 2020, 70 cases have been approved and NT$ 1.62 million has been allocated to help nearly 300 family members to sustain their lives.

To enhance the public awareness of rare diseases, TFRD has been working closely with various organizations and through various media channels. In 2020, TFRD invites actor Xiu Jie Kai as public ambassadors.

TFRD provides continuing education courses for the professionals who provide direct service to rare disease families in different fields, such as schools, welfare organizations, and nursing homes. In these courses, professionals can learn about the knowledge of rare diseases, and the skills of caring. In 2020, TFRD holds 2 professional courses and 8 education advocacies for general public.

To promote public awareness of rare diseases, TFRD regularly releases publications, digital resources, official updates on the website, Facebook and LINE. TFRD publishes 5 books with external partners as well as 25 books on rare disease series, 22 disease self-care brochures, 84 quarterly magazines with a total circulation of 891,100 subscribers, 137 issues of e-newsletter, 149 kind of leaflets; 21 CDs/DVDs, 8 annual reports. In particular, we publish 2 picture book series with 24 books of “The Story of Firefly Island” based on the materials of radio drama. We also made playing cards for public to recognize rare disease easily.

To enhance the incentive for rare disease research, TFRD offers the research grants and scholarships to the experts, scholars and medical professionals in Taiwan. Until now, we issue 43 projects for NT$18.94 million and 132 scholarships for NT$5.2 million. The yield of those researches is highly productive, especially in the improvement of patient’s quality of life and medical development. 

Although under the COVID-19 pandemic, TFRD still connects with international associations in the hopes of fostering information exchange and collaboration. This year, we participated in the investigation and press conference of the “White Paper on Rare Disease Awareness” initiated by CSL Behring and The Economist Intelligence Unit. In addition, we cooperates with a famous YouTuber阿滴英文to make a propaganda film, and hold basketball camp activities to respond to the International Rare Disease Day.

Rare Welfare Center is another key project of TFRD’s 2nd decade establishment. The project aims to create a place where patients feel comfortable to attend various activities, such as farming, leisure, rehabilitation, psychological counseling, skills cultivation, respite care service, family activities and social education. 12 years of planning, the groundbreaking ceremony was officially held on the morning of February 21, 2020, which symbolized a new journey; the first welfare home for rare diseases in Asia was finally built. Construction of the service center is expected to complete in April 2022.

This year, TFRD publish the book ‘20th Anniversary of Legislation for Rare Disorders in Taiwan’. This publication reviews the achievements of the implementation of Taiwan Rare Disease and Orphan Drug Act in the past 20 years. It contains the services and supports from the government agencies (Health Promotion Administration, National Health Insurance, and Taiwan Food and Drug Administration), and the opinions of patient groups and family members of the rare diseases. It is hoped this book can be served as a reference for the subsequent relevant legislative campaigns.

TFRD is very grateful to our society for caring about the needs of RD patients. From the beginning of this year, kind people from all walks of life donated many anti-pandemic materials such as masks, alcohol, cleaning liquid, and forehead thermometers. The financial support for RD families continues to flow into TFRD until today. The comprehensive care makes RD patients feel the warmth in the grueling year 2020 when everyone is struggling to cope with the pandemic.
 

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