Life Education Speech
The existence of rare diseases is often ignored or inattentive by the people. TFRD not only wants to share desolate stories of the patients to the public, but also to uncover the problems that exist in our society. Therefore, TFRD has been working closely with various organizations and through various media channels to raise the awareness of rare disorders to the general public. TFRD aims to help the society to better understand the rare disorders, provide proper cares to the patients, and recognize the importance of the issues.
Because rare disease is rare and hard to be cured, patients with rare disorders experience tremendous difficulties in life. Nevertheless, their diseases and hardships have made them the strongest fighters. Patients’ family plays an important role in supporting patients to fight their disorders. These patients are ordinary and yet extraordinary. Despite the challenges and pains in life, they overcome the obstacles and embrace their lives. We invite patients and families to give speeches to share their personal experiences. These stories might just be patients’ everyday life, but they could be life lessons to many of us, to help us to cherish and appreciate what we have.
Print Media Propaganda
Print media is an important channel to advocate for rare disorders, including newspaper and magazines. Besides collaborating with medias, TFRD also invites celebrities and stars from different fields to be our public ambassadors.
TFRD wishes that the influence of celebrities would not only gather people to support public welfare, but also catch their attention to rare disorders. Since 2007, TFRD has invited more than 40 celebrities and sports stars to shoot public welfare commercial. In order to raise the awareness of rare disorders, the promotion could be seen on the public transportation and in the press media.
Public Ambassador:
2007-孫燕姿 (Stefanie Sun )
2008-蔡依珊 (Patty Tsai)
2009-關穎 (Terri Kwan )、藍正龍 (Lan, Cheng Long )、周幼婷(Jade Chou )、溫昇豪 (James Wen )
2010-FIR、林智勝 (Lin, Chih-sheng )、侯文詠(Hou, Wen-Yong )、光良(Michael Wong )、趙少康(Chao, Shao-kang )
2011-謝震武(Hsie, Zhen-wu )、張泰山(Chang, Tai-shan )、許瑋甯(Tiffany Ann Hsu )、于美人(Belle Yu )
2012-蕭敬騰 (Jam Hsiao )、朱木炎(Chu, Mu-yen )、中華職棒球星 (Professional Chinese Baseball League Players)、Janet
2013-中華職棒球星(Professional Chinese Baseball League Players)、林依晨 (Ariel Lin )、隋棠(Sonia Sui )
2014-中華職棒球星(Professional Chinese Baseball League Players)、盧廣仲(Crowd Lu )、桂綸鎂(Kwai Lun-Mei )
2015-中華職棒球星(Professional Chinese Baseball League Players)、伍佰(Wu Bai )、張鈞甯(Janine Chang )
2016-郭泓志 (Kuo, Hong-Chih )、宋芸樺(Vivian Sung)
2017-解偉苓(Yvonne Jie)、王建民(Wang, Chien-Ming)、曹竣崵(Tsao, Chun-Yang)、孟耿如(Summer Meng)
2018-侯佩岑(Patty Hou)
Eletronic Media Propaganda
Media is an important tool to spread and disseminate information. TV media utilizes sound and light effects to send messages; radio channels employ changes in tones to deliver information to audience. Through the media, we are able to pass on stories of rare diseases, to eliminate the strangeness of diseases, and to help the general public to better understand and care for the rare disorders.
CTS News Magazine--Seeing the Extraordinary Vitality
TFRD has been producing special TV topics since 2012, and is looking forward to set a milestone in advocating rare disorders. TFRD collaborates with Era TV to produce 42 episodes of “Formosa-- Seeing the Extraordinary Vitality.” Through the studio interview and the VCR, the show is able to present patients’ stories and issues of rare disorders appropriately.
From 2015 to 2017, TFRD collaborated with the CTS News Magazine to produce 11, 8 and 8 episodes respectively, and completed 25 episodes of 10 min special topics. Each episode invited protagonists, professionals, government agencies, non-governmental organizations, and healthcare professionals to discuss the topic of the episode. The goal is not only aimed to raise the public awareness of patients’ needs and difficulties, but to inspect how the society, government, and the law could work together to solve problems and reform the system. Through understanding rare disorders, we could reflect values and meanings of life.Philharmonic On Air -- Hearing Different Voices
To break the invisible boundary between patients and the general public, and advocate rare disorders from school to home, TFRD collaborates with Philharmonic Radio Station to produce 12 episodes of radio drama-- “The Story Island of Fireflies.” Each episode introduces different types of rare disorder in a way that is easy to understand and relate to. The audience and children would not only become more familiar with these extraordinary patients, but also learn how to help them.In 2017, TFRD produced the first microfilm called “Rollcall”, using short images to tell stories and looking forward to shooting a resonating film with limited resources.
“Rollcall” is performed by a professional actress, Phoebe Lin, who plays as a rare disease patient, and joins part of documentary including real patients to address their expectations for the future. The public's response to the microfilm is very enthusiastic, with more than one million viewers on the internet and many celebrities actively sharing the microfilm through their Facebooks.
There are many public figures cooperated with TFRD enthusiastically, not only give smiles to shoot print media, but also record radio advertisements with their friendly voices for rare disorders. Through these resources, TFRD wishes to spread love to every corner of our society.
