New Radio Program--Hsin Love World

New Radio Program, Hsin Love World on Rare Disorder   

More than pain, inconvenience, body function's regression, how do rare disease 
patients feel about relationships of families, couples and friends, life's meanings, 
loneliness? 

In order to broadcast rare disease patients' stories, TFRD held a new radio program, 
Hsin Love World on the air, host by TFRD's image representative, Yu-Hsin Yang. 
The 60-minute program is broadcast every Saturday afternoon. 

The celebrity, including film director, actress, popular author etc., are invited to 
discuss with rare disease patients and their families about love, loneliness, sorrow, 
death, gratification, gladness and learning. It's a new way to understand rare disease 
patients' minds, furthermore, to reflect on our lives. 

Hui-Ping, having 6 younger sisters and brothers affected by Spinocerebellar Ataxia, 
has bore the whole families for 30 years. How did she face her predicament that most 
people are unable to afford? 

Chin-Kuei is a mother who has a daughter affected by Hereditary Epidermolysis 
Bullosa. 19 years ago, rare diseases were not well known by the general, even doctors. 
Few doctors knew the treatment to treat her daughter. Besides, the mistaken wrap 
caused her daughter's toes inseparable. As the first case of EB in Taiwan, how did the 
mother overcome the difficulties, including beloved daughter's endless aches and 
pressure from her families? 

Rare disease patients' lives are full of frustrations, obstacles and difficulties. However, 
we are surprised to their optimism, which also encourages healthy people. It's welcome 
to the Hsin Love World website, knowing more life stories about rare disease patients.