Recipient Charity
2019 “Art Your Compassion” Charity Program
Introduction of Taiwan Foundation For Rare Disorders
In June 1999, a new social terminology emerged in Taiwan’s society, where the term “Rare Disease” was previously unheard of. Two parents believed in the concept that “We can’t take care of our children forever, but a well-established system can.” Dr. Tseng and Ms. Serena Wu, each with their own children afflicted with rare diseases, undertook the long path to fight for new rights and benefits for rare disease patients.
TFRD's mission is to improve the life of rare disease patients. We carry out our mission by assisting rare disease patients to receive proper medical treatment and rehabilitation, securing orphan drugs and special nutrients and fulfilling the needs of rare diseases patients in terms of education, employment and long-term care. As a representative for rare disease patients in Taiwan, TFRD advocates the adoption of relevant legislation that ensures rare disease patients’ rights, encourages rare disease research, and raises public rare disease awareness.
Protection of Patients’ Rights
‧Protection of Patients’ Right
‧Government Policies
‧Publicity of Rare Disease
‧International Network of Rare Disease Organizationss
‧Care & Home-visit of Patients & Families
‧Cooperationwith Medical Institutions
‧R&D on Rare Diseases
‧Incubation of Patient Groups
‧Cooperation with Medical Doctors
Rare Disease in Taiwan
Rare disease, as its name suggests, are those diseases with very low prevalence and affects only a small number of people. In Taiwan, according to the “Rare Disease Control and Orphan Drug Act”, which is legislated in 2000 as the 5th Orphan Drug Act in the world, the standard for rare diseases is if it’s prevalent in less than 1/10,000.
In 2018, the government has categorized 220 diseases as officially proclaimed rare diseases. TFRD has been serving patients with 254 rare diseases affecting more than 14,000 people. So far 84 orphan drugs and 40 special nutrients have been approved by the government for treating patients.