Planned Hsinchu health center opposed

KNOWLEDGE GAP::The Taiwan Foundation for Rare Disorders called on residents to gain a better understanding rare diseases, and the center that is planned for Hsinchu

By Alison Hsiao  /  Staff reporter

Tue, Jan 07, 2014 - Page 5

The Taiwan Foundation for Rare Disorders said it is planning to establish a stress-relieving health and well-being center in Hsinchu for the nearly 8,000 Taiwanese who have a rare disorder and their families.

However, during an information session held on Sunday in Hsinchu’s Guansi Township (關西), the plan was reportedly opposed by residents who fear the center would devaluate their land.

It was reported that residents said the project would pollute the environment and bring people with “contagious” diseases to the area.

Lin I-ping (林宜平), the director of the foundation’s service center project, called for better understanding among the public of people with rare conditions.

The foundation rejected concerns about disorders being communicable, saying that, as the name implies, these diseases have an extremely low rates of prevalence.

In Taiwan, a disease is defined as rare if it's a genetic disease with prevalence smaller than 1/10,000.

Some well-known rare diseases covered by the foundation are: Spinocerebellar ataxia, phenylketonuria, mucopolysaccharidoses, osteogenesis imperfect — also known as “brittle bone disease” — and thalassemia.

The foundation reiterated that the service center in Guansi, which is intended to function as a leisure farm, would offer rehabilitation assistance, psychological treatment and consultation, and respite care.

More than half of the land it leased would be turned into green areas and gardens, the foundation said, adding that the project would be based on the principle of respecting the environment.

Lin was quoted in a Central News Agency report as saying that many similar projects met resistance from local communities.

The Ronald McDonald House Charities’ plan to build short-term accommodation in Taipei for families with children who are suffering from cancer or other severe diseases and are receiving treatment in the capital was challenged in 2012.

The Down Syndrome Foundation’s plan to move its workshop to Taipei’s Daan District (大安) last year also faced opposition from area residents, who said that the center would “affect their quality of life.”

However, it was encouraging that the foundation’s effort to set up “collaborative families” in rented rooms in New Taipei City (新北市) to help people with spinocerebellar atrophy a few years ago did not meet such objections, Lin said.