| 2008 |
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January
 We established rare disease home visit service team (northern part of Taiwan) combining physical therapists, language therapists, nutritionists, occupational therapists, psychology counselors and volunteer workers to better meet rare diseases patients’ various needs. Home visit service was brought to 47 patients and 2 patient family members.
February
Rare Disease Group Home established in Taipei county, with 3 patients and a helper live in it. In the group home, patients and their families can have independent living but at the same time can look after each other. Lodging and subsidy to maintain livelihood are provided.
March
Heavenly Melody Chorus-Central and Southern were established in March, gathering patients in central and southern Taiwan to attend singing classes during the weekends. Heavenly Melody Chorus-Central currently has 25 patients & 20 patient’s family members. Heavenly Melody Chorus-Southern has 24 patients and 20 patient’s family members.
We arranged 10 Family Support Series Classes for patients and their families. Topics include: life insurance and personal finance arrangements, medical resources, massage & yoga courses, and art therapy.
Despite of existing 2 two-day trips for patients, in 2008 we held extra 8 experience activities for more patients. They got a chance to go to the baseball stadium to meet professional baseball players, to rice fields to experience traditional sowing, and to tea garden to taste various delicious tea. 599 patients and their families have participated in our recreational activities.
April
We continuously expanded patients work opportunity by cooperating with Nu Skin Enterprise for Nu Cafe.
Patients’ Physical Therapy Courses held in TFRD’s Taichung branch office, serving 20 patients.
We launched volunteer workers’ training program for volunteers in central and southern Taiwan in order to help them learn more about rare diseases and how to help the patients.
May
Ms. Patty Tsai met with an EB patient as part of the making of a TV advertisement for TFRD and also for the promotion of rare disease awareness.
We launched the Cheer for Life article contest in order to encourage patients to tell their storiesand practice writing. Also, it's also a good preparation for publishing their own books in the future.
We invited the most authoritative FOP researcher in the world, Dr. Frederick S. Kaplan from The University of Pennsylvania School of Medicine, the author of the fascinating book “Finding the Magic Mountain: Life with Five Glorious Kids and a Rogue Gene Called FOP”, Dr. Carol Zapata-Whelan, and her son with FOP disease, Vincent Whelan, to meet FOP patients and FOP researchers and physicians.
Low-protein coupons were distributed to metabolic disorder patients. With the coupon, patients can exchange for low-protein food or special formula.
July
TFRD’s broadcast program, Hsin Love World, started broadcasting in ZhengShen broadcast station. The program also won the 2008 Golden Bell Award--best broadcast hostess and was nominated for the best broadcast program.
August
We recruited several volunteer workers to make regular phone visits to our patients. All the workers are trained with basic counseling skills.
We published Rare Disease Resource Handbook I and II, collectively introducing the government and TFRD’s welfare system.
We held Heavenly Melody Chorus (northern, central and southern) concert tour. Patients performed in Taichung and Kaohsiung, attracting more than 2,000 audiences.
October
Rotary International and Cycling Life-Style Foundation co-held a trip-around-Taiwan fundraising campaign in order to raise fund for rare disease clinical trial fund.
We launched Mommy’s Story Hour campus advocacy project to teach children about rare disease and how to get along with rare disease patients.
November
We held the sixth scholarship ceremony, with 259 scholarship winners.
December
The 2nd Rare Disease Tissue Bank meeting was held in December to build consensus and gather suggestions from various aspects including the government, academic communities, medical communities and patient organizations. |
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