Summary of 2016 Annual Report

Taiwan Foundation for Rare Disorders (TFRD) was founded 18 years ago in 1999. At that time, patients with rare diseases experienced ignorant and lack of assistance in our society. TFRD promoted “Rare Diseases Prevention and Orphan Drug Act,” made rare diseases into the Catastrophic Illness List of National Health Insurance (NHI), made patients included into the benefit package for Disabled persons and advocated medical reimbursement of orphan drugs covered by NHI. TFRD also advocates and lobbies for the amendment of current legal systems to improve patients’ overall needs. TFRD has made a great progress after years of hard work, and patients’ basic rights are guaranteed protected by the law. TFRD then moves on to provide series of service in medical care, education, primary and psychological care. TFRD expects itself to have every patient’s back, and provide all-round assistance.

In 2016, TFRD served 249 kinds of rare diseases, 5,808 patients (included 785 patients have passed away). We are not only serving patients but their family as well.  Our direct services are divided into Service Project and Personalized Service based on the family needs. This year, our Service Project has provided 14,583 times of service, including financial assistance, maternity care, rehabilitation program in home, low- protein food subsidy, psychological counseling, scholarship and microinsurance. Our Personalized Service has served 4,857 times to patients, providing genetic counseling, nutrition counseling, social resource management, and medical care. TFRD has been monitoring and following-up 378 high-risk families and providing assistance. Besides assisting patients with rare diseases, TFRD also provides health care consultation  to  the general public, 555 cases in total. TFRD also cooperates with Taiwan Organization for Disadvantaged Patients to assist 32 minority patients, offering sincere condolences, emotional support, and reach out for resources.

In order to provide a whole, friendly policy and social welfare for rare disorders, TFRD continues to advocate and lobby for services in diverse ways. In 2016, TFRD lobbied for amending sub-laws of “Rare Diseases Prevention and Orphan Drug Act,” provided suggestions, and paid close attention to the issues that are related to patients’ rights, including NHI, CRPD, rights of disabled persons, and long-term care. TFRD has been advocating through many different ways and media to gain attention and recognition from the general public. TFRD also produced shows on TV, for example, CTS News Magazine-- Seeing the Rare Vitality, and Philharmonic Radio Taipei On Air — Firefly Story Island TFRD also invited baseball players, Hong-Chih Kuo, Chuang-hsun Tu, Yu- Chen Liu, and actress Vivian Sung as our public ambassadors.

In order to advance and support researches and publications in rare diseases, TFRD funds research project, provides scholarship for graduate students, publishes publicity, and runs official website. TFRD had participated and attended international conferences for rare disorders to share experiences with other countries, including Indonesia, Vietnam, China, Malaysia, and Hong Kong in 2016. TFRD was invited by the NGO Committee for Rare Diseases (United Nations, New York) to give a Keynote speech at the inaugurating. Unfortunately, TFRD was not able to join the event due to political conflicts internationally, but our effort for rare disorders had been seen by the world.

Looking back to 2016, TFRD invites you to stay and move forward with us to assist rare disorders to enjoy life in 2017.

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