Page 6 - 2016年會務暨成果報告

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

２０１６年會務暨成果報告

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