最新消息

The foundation points out that around 14,000 families in Taiwan are affected by one of the more than 250 rare diseases existing in the country. Treatment is still pending for over 70% of these diseases. All these families not only have to provide long-term care as their family members battle with such diseases but also face extreme hardship and severe economic pressure in the care process. However, due to the rarity of these diseases, most people find it hard to empathize with these families. This 1000-participant charity walking event is the first of its kind organized by the foundation in its 20-year history. The event drew 1500 participants from private logistics enterprises such as Panda, Dolphin, Whale, Pegasus, Magical, Draco, Penguin, and Pelican. These participants walked in solidarity with families afflicted by rare diseases in the riverside park, which bears clear testimony to the gradual success of the foundation’s advocacy campaign over many years.

Mr. Yung-Hsiang Yang, President of TFRD, reveals that he was absolutely stunned when he learned that some of the participants had come all the way from Kaohsiung and Taichung. They had to depart at 5:00 am just to take part in this event which represents an unprecedented success in TFRD’s twenty-year history. In addition to serving as a fundraiser, this event also bears witness to the rising public attention to the issue of rare diseases. No pop stars or celebrities were enlisted for this event which featured song and wheelchair ballroom dance performances by rare disease patients who were showered with loud cheers by employees of participating corporate groups. Around 100 patients and their families were present at the venue. Some of them expressed surprise at the large number of supporters for their cause.

President Yang further announced that this charity event raised a total of 4.255 million NTD which marks a record high in the 20-year history of the foundation. TFRD founder Li-Yin Chen points out that this is an extremely significant charity event which is unprecedented in the foundation’s history. In the process of their interactions with rare disease patients present at the venue, the employees of the aforementioned corporate groups gained a better understanding of their needs and their determination never to give up hope. This also reflects the core concepts which have been advocated by the foundation over many years.

The foundation stresses that these donations will be used to provide medical care for rare disease patients and that the goal is to mobilize a rising number of citizens to join the advocacy campaign titled “because of you, love is not rare.”