Transforming Rare Lives
International Conference of 20-Year Retrospect and Prospect on Rare Disease in Taiwan
20th TFRD and THGS Joint Symposium
Date:20th Oct. 2019, 09:00-17:30Venue: Room 1001, Chang Yung-Fa Foundation International Convention Center
No.11, Zhongshan S. Rd., Taipei, Taiwan
For 20 years, Rare Disease which was once ignored has earned support of the government and general public. In spite of great difficulties, it has come a long way.
“Rare Disease Control and Orphan Drug Act” has taken effect since 2000 and for years it has fostered rare disease prevention and orphan drug distribution. Involving planning, execution, operation and tracking, the achievements derive from the collaboration of the medical community, government agencies and patient groups. On the occasion of the Act in effect for almost two decades and the 20th anniversary of Taiwan Foundation for Rare Disorders (TFRD) and Taiwan Human Genetics Society, we are co-organizing the international conference in hopes of looking back at the path taken by TFRD from medical developments of rare disease to patient group advocacy and the role of publicity. By international exchanges, we also wish to learn from other countries’ innovative care of rare disease patients and look forward to a bright future.
The conference has gathered experts and scholars of the rare disease community from the US, Canada, Australia, Korea, Vietnam, Malaysia, Thailand, Taiwan to share valuable experience. There are two themes, one is about medical therapy in the morning and the other is about patient group advocacy experience in the afternoon.
Back then, medical resources of rare disease in Taiwan were hard to acquire; the assistance of medical system was scare, and prevention was stagnant. Rare disease patients were nearly excluded from the social safety net.
Profoundly empathized with patients’ predicaments, Ms. Serena Wu and Prof. Min-Chieh Tseng, both patients’ parent, were set to establish the foundation. In June 1998, they started to raise startup fund. A year later, 10 million dollars (USD333,333) were raised without financial backup of businesses and hospitals but with small donations from the public. Taiwan Foundation for Rare Disorders (TFRD) was founded on June 6 1999, starting to spearhead a campaign to strive for medical rights and benefits of patients as well as promote eugenics and policy reform. The foundation had tackled a variety of issues at the same time.
TFRD has been the strongest supporter of rare disease families for more than 7300 days. "We can't take care of our children forever, but a well-established system can.” Starting out with issue advocacy, we insist on providing innovative, warm and pleasant services to keep rare disease families from doom and gloom in quest of hopes and dreams.
When genetics physicians explained rare disease to the public, they often felt troubled by the fact that there was no way to grasp and cite the prevalence of genetic disease in Taiwan, which also caused great inconvenience of medical research.
For the well-being of patients and the advancement of academic level of human genetics, the genetics community worked together to form Taiwan Human Genetics Society in hopes of establishing national genetics database and rare disease registration system.
Through society’s programs, people are made aware of where to acquire medical resources of genetic disease and primary-level physicians are knowledgeable about how to make referrals of genetic disease patients. In addition, physicians are familiar with how to take advantage of the resources of other medical institutions and the specialty of diagnosis centers and physicians are integrated. Medical resources relevant to genetic disease are well utilized.