Professional Training

As people’s awareness of issues for rare disease increases, people’s needs and concern for genetic counseling increases as well.  However, average medical personnel, specialists serving rare disease patients or patient groups do not have a complete understanding about how to provide the necessary services to rare disease patients.  In order to improve the services for rare disease patients and to strengthen the cooperation among different professional arenas, ongoing education for related professional personnel and patient groups is necessary. 

TFRD has organized training courses for medical personnel and patient groups. After the first “Training Program for Genetic Counselors” was held in 2000, TFRD held a seminar for social workers of rare diseases in 2002, and had kept holding training courses for patient groups on a continuing basis ever since. In 2008, TFRD arranged courses for cadre members of patient groups to help them networking different resources.  Courses ( introduction to long-term care resources, application of foreign helpers, case management, use of certain medical equipments) for the direct service providers were also available. Special courses were disigned for patient groups in central and southern Taiwan as well.  In 2017, 2 different courses were provided.

Volunteer Training

As volunteer work becomes increasingly popular, TFRD hopes to encourage young volunteers to participate in volunteer works and thus learn the value of life and grow from the work they do.  We believe volunteer works can bring positive influence on youth but can also show them the true spirit of social service. Furthermore, with the increasing patient service and increasing number of patients, TFRD expects to improve our service through the contribution of volunteers, in respect of administrative affairs, various activities, performing workshop, professional assistance, or even connecting all kinds of resources available. Therefore, TFRD has been recruiting and organizing Volunteer Training Programs for future volunteers.  First Volunteer Trainging Program was held in 2004 and there were total 33 participants. Number of
volunteer workers increases ever since.

In 2008, around 148 volunteers finished the training programs.  Volunteer workers helped in large activities, one-day trips, performing workshops, home visits, adminstrative affairs, etc. Volunteer's Testimony Experience leads to  understanding, empathy and acceptance I still remember the volunteer training day was a rainy day. As I entered the classroom, I didn't expect to see so many young people, and most of them are high school students! couldn't help wondering what these "kids" were doing here. 
I was even surprised to know that some of them had been volunteers for 5 to 6 years!  They changed my prejudice of this cold and distant society.  After the training program, I was so deeply impressed by the patient's sharing, the experience activity and the feedback activity at the end. 

Through the patient's sharing, I realized how lucky I actually am. Some people really lived a happy and full life while they are alive, though their lives may be short.   People often take what they have for granted.  They don't know that happiness vanishes as they complain. 

In the experience section, we had to use the walking stick to walk down the aisle to finish an assignment, for instance, fetch a toy on the table and tried to avoid the blocks on the way.  Even though I have known the route, when I covered my eyes, suddenly everything is wrong! Think about it… do we often ignore things and people around me?

The final activity before the end of the training course was also very impressive.  We formed groups of 7-8 and everyone had to be the "person in the spotlight" and accepted everyone's positive comment about him/her.  Then two people had to go to the center of the room and accepted everyone's applause.  Almost everyone was shy but we all know they're all worth praising.  They all chose to give and contribute and therefore
their lives are full and happy. I have been thinking of 'Experience leads to understanding, empathy and acceptance."  and I have made up my mind to become a volunteer.  I believe with volunteers' love, giving, and contributing, this society will eventually become a happy and loving paradise.
Hu, Yue-Chi