Summary of 2019 Annual Report

Established in 1999, Taiwan Foundation for Rare Disorders (TFRD) has marked its 20th anniversary for striving together and building up a solid base to better safeguard rare disease patients and their families. We are dedicated to becoming a patient-centric non-government organization.

In 2000, TFRD supervises and urges the passing of the legislation of “Rare Disease Prevention and Orphan Drug Act”, which made Taiwan the fifth country in the world with relevant rare disease laws. The Act is also the first law that covers the subsidies for rare disorders prevention, cure, and research and development of rare disease. 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 204,719 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 2019, we serve 257 kinds of rare diseases with nearly 16,000 patients. Our direct services are divided into Service Programs and Personalized Services based on the family needs. This year, the Service Programs provide 18,966 times services about economic benefits, tube feeding dietary supplement, psychological counseling, performing workshop and micro insurance. The Personalized Services provide 7,739 times for genetic counseling, nutrition counseling, social resource management and relative medical services. TFRD also helps 324 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. In addition, in cooperating with Taiwan Organization for Disadvantaged Patients, we provide mental support, resources referral and counseling to patients who are medically disadvantaged.

To enhance the public awareness of rare diseases, TFRD is dedicated to increasing media exposure with various promotion activities. In 2019, TFRD invites Bii and Vivian Hsu, both actors and singers, 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 2019, TFRD holds 2 courses for college students and 2 professional courses for social workers and nurses.

To promote public awareness of rare diseases, TFRD regularly releases publications, digital resources, official updates on the website and Facebook. TFRD publishes 5 books with external partners as well as 24 books on rare disease series, 22 care brochures, 80 quarterly magazines with a total circulation of 863,750 subscribers, 137 issues of e-newsletter, 143 kind of leaflets; 20 CDs/DVDs, 4 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 this year 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 42 projects for NT$18.14 million and 122 scholarships for NT$4.85 million. Those researches yield rich harvest, especially in the improvement of patient’s quality of life and medical development.

TFRD also proactively connects with international associations in the hopes of fostering information exchange and collaboration. This year, TFRD hold the grand meeting－“Transforming Rare Lives－International Conference”. It has gathered experts and scholars of the rare disease community from the US, Canada, Australia, Korea, Vietnam, Malaysia, Thailand, Taiwan to share valuable experience. In 2019, TFRD representatives are invited as international speakers by several organizations to share our experience, including “CORD-RDI－A Rare International Dialogue” in Toronto, and “Policy and experience sharing” in Thailand. Several international groups and experts of rare disease also paid a visit to TFRD, including Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group, China Porphyria Association, Congressman of Brazil, Asia Pacific Alliance of Rare Disease Organization, and the patient representatives from Japan and Thailand. One thing worth mentioning is that we become a member of APARDO, and our chairman is nominated for the APARDO Board of Directors at the end of 2019.

Hsinchu Kansai Welfare Home 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. TFRD commissions the construction company to build our Welfare Home in 2019. Hopefully Hsinchu Kansai Welfare Home will be open in 2022.

Through TFRD’s hard work in the past 20 years, the achievements of improving the situation of rare diseases in Taiwan have been widely recognized. The founder and co-founder both won the “Rare Hero Award”, and TFRD also received the “Rare Disease Prevention Contribution Award” from the Ministry of Health and Welfare. Looking back on 2019, we have celebrated our 20th anniversary by a series of activities, from music concert on 9th June, international conference on 20th October, Exhibition on 23th to 30th October, to 6 documentary and 1 book. We completed many impossible tasks, thanks for the support and care from everyone.

The treatment and care for rare diseases is a lifelong journey. We invite the general public to be the volunteers or donors of TFRD. With your help and love, rare disease families will never give up.

Attachment：