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2009 |
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Feburary
 Rare Disease Group Home establishes in Taipei county, with 3 patients and a helper live in it. Lodging and subsidy to maintain livelihood are provided.
Rare disease unemployment press conference held to ask the public to help rare disease families whose financial burden increased due to global financial crisis.
March
EMBA Alumni Association of National Taiwan University of Science and Technology (NTUST) holds a charity concert for rare disease patients, and donates NTąC400,000 to Taiwan Foundation for Rare Disorders.
In cooperation with TFRD, ChangHua Christian Hospital at the opening ceremony of rare disease center offers tests for 5 rare diseases. TFRD subsidizes 50% of the testing fee in order to alleviate patients’ burden while seeking correct diagnosis.
2009 rare disease recreational activities launches.
April
Enactment for TFRD Rare Disease Tissue Bank is established and passed by the TFRD board.
Medicare Brochure of Williams Syndrome and Duchenne Muscular Dystrophy are published
May
A new way to help us with “7-11 ibon barcode donation” is established (exclusively available in Taiwan).
2009 Rare Disease Family Support Courses is launched, with 9 different classes and 264 participants
TFRD-central office holds a one-day course of Introduction to Rehabilitation with 34 participants
TFRD holds a Teenage Interpersonal Relationship Camp for teenage patients to learn how to express themselves, communicate well, and expand their relationship with others.
June
Two “Parenting skill and Loho Life” courses is held in TFRD-Taipei office, and 62 patients and families participate in the courses
TFRD assists the establishment of Taiwan Epidermolysis Bullosa Association
Rare Disease Resource Book IV is publishes, helping patients to find suitable long-term or resident care aides, assist machines or caregivers.
July
TFRD holds the first Rare Disease children’s basketball camp.
2009 rare disease patients’ summer camp with 300 people’s participation.
TFRD Happy Summer Talent Class is held in TFRD Taichung branch office.
Eazy Card Co., provides 1200 sets of tailored TFRD painting card for charity sale.
TFRD patients are invited to the 2009 Chinese Professional Baseball League-Star home run contest.
August
TFRD contracts with YongLin Healthcare Foundation on advocacy and education projects for people at high-risk of giving birth to children with rare diseases and relative projects on preventive medicine.
Reacting to the damage caused by Morakot typhoon to rare disease families, TFRD gives home visits in Southern area and provided necessary help.
September
“Love Brings US Here” concert is held at Taipei Grace Baptist Church.
“Sound of Love” concert in celebration of the 10th anniversary of TFRD is held at Taiwan CPC Corporation conference room.
TFRD’s broadcast program, Hsin Love World, starts broadcasting in Taiching FM100.7 station.
“Ten Years of Color, Love knows no Disorders” patient’s Painting Exhibitions are held at Taipei Living Mall and China Medical University hospital in Taichung.
October
Contracted with Bureau of Health Promotion Department of Health, TFRD carries out the Public Education for Rare Disease Project.
TFRD, Taiwan Human Genetics Society, Taiwan MPS Society, and Genzyme Corporation co-held” The 2009 International Joint Symposia on Rare Diseases in Taiwan”.
2009 International Conference of National Policies and Actions on Rare Disease is held at Taipei Sheraton Hotel.
November
Colors of light’ painting exhibition is held by patient Pei-King, Chun-Wei and Yi-Chu.
TFRD holds 2009 rare disease patients scholarship ceremony, with 305 patients awarded.
December
TFRD attends the negotiation meeting held by Ministry of Interior on reimbursement for rare disease patients’ electronic fee.
Documentary on Taiwan Foundation for Rare Disorders premieres on Channel Much.
The TFRD Tissue Bank Program passes the Institute Review Board of China Medical University Hospital, and starts collecting human tissue. |
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2008 |
 
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2008
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.
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
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.
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.
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.
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.
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.
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.
We held the sixth scholarship ceremony, with 259 scholarship winners.
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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2007 |
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2007
Taichung City Branch Office has been established and we opened up courses on Sensory Integration and Rehabilitation for the patients in Middle Taiwan.
Formally promoted several new services.
1.Home care & phone care services. The services include psychological consulting, self-care and treatment instructions and assisting patients in seeking appropriate medical care.
2.Comprehensive Family Support Program. We opened up diverse courses on medical and psychological counseling, home nursing and even the scheme of personal finance...etc., intending to help the patients’ living in different aspects.
3.Encouraging Grief Consulting. To support the patients or their family to recover from the grief of loosing family members.
4.Nu Cafe. Cooperation with Nu Skin Enterprises Taiwan branch, providing a space for rare disorder patients selling their hand-made products to create employment opportunities.
Held the 1st Heavenly Melody Chorus Concert at Grace Baptist Church on April 20. This first show drew almost 800 attendants
On July 6, we conducted a seminar on “The Future of Tissue Bank for Rare Disorders and Genetic Diseases” in efforts to enhance diagnosis, treatment and research of rare diseases.
In early August, we helped the brothers Yi-Kai and Yi-Chi, Tseng who are both afflicted with Duchenne Muscular dystrophy, to fulfill their dream of visiting the New York and the Statue of Liberty.
The 1st athletic meet for rare-disease patients was held.
Started the cooperation with Yahoo Taiwan to assist the patients starting their online business.
Held the painting contest, expression of hope by paintings, inviting rare disorder patients to express hope and dreams on drawing papers. Our Kaohsiung City Branch Office held a exhibition to share the public these touching paintings.
Government of Taiwan officially announced a revised list of the subsidy of assistive devices. That is a great welfare for the rare disorder patients.
Impressive broadcasting program hosted by the image Representative of TFRD, Yu-Xing Yang, won Golden Bell prize for best social service program.
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2006 |
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2006
TFRD formally joined EURORDIS and become one of the members.
The president of TFRD, Dr. Yuan-Tsong Chen, with his researching team announced the first treatment ever for Pompe disease called "Myozyme". This treatment has won marketing approval from U.S. Food and Drug Administration as well as European Medicines Agency.
Our English website officially announced. TFRD issued the 1st English newsletter in expects to establish an international platform for academic and medical intercourse.
After 5-year effort, we successfully achieve the goal to make Taiwan government officially took over the execution of the "Expanded Newborn Screening Plan" since July 1st. Adopted the Tandem Mass Spectrometry technology to screening, which could identify more than 20 congenital metabolic disorders, could greatly enlarge the scale of newborn screening.
The vice president of TFRD, Dr. Min-Chieh Tseng and several board members received the awards from government to recognize their outstanding personal contribution and good performance.
To assist families with rare diseases to have health babies, we started “the Project of Birth Concern”, Subsidizing 7 families with rare disorders.
Held “We Should Be Humble When Facing the Dignity of Life” International Press Conference to submit three medical appeals:
1.Since it is very difficult to diagnose a rare disease, diagnosis and confirmation require great care.
2.It is important for patients and physicians to seek a second opinion on rare disease diagnosis and treatment.
3.Research on complications of rare diseases is lacking. Teamwork is the key to save life.
Image Representative of TFRD, Yu-Xing Yang, made a whole new broadcasting program “Hsin Love World on Rare Disorder”, sponsored by Kuan-Shu Educational Foundation, to share the touching life stories of rare disorders families to the public.
TFRD received the National Civic Service Award awarded by the NPO Service Organization in recognition of our contribution in servicing rare disease patients.
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2005 |
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2005
Established the long-term care fund and provide long-term care assistance to patients.
Launched the "College Rare Disorder Advocacy Campaign"
Cooperated with Taiwan Life Education Association and adopted rare diseases as teaching materials into life education courses for schools.
Held a Professional Training Seminar for personnel concerned with rare diseases and enhanced their professional knowledge on rare diseases.
Organized the International Conference on Genetic Medicine and Promoting Healthcare for Rare Disorders.
Published several advocacy publications in English.
Co-marketed "Ba-Fu Charity Credit Card" with 7 social welfare groups seeking support from the public.
Displayed social welfare advertisement for public advocacy.
Continued to organize patient tours and incubated patient groups.
Continued to pay attention to the global budget's influence on rare disease patients and receive NT$2.66 billion dollars specifically for hemophilia and rare disease patients.
Participated in the revision of the Physically and Mentally Disabled Citizens Protection Act and Special Education Law.
Established Southern Region Office in Kaohsiung to extend our service to southern Taiwan.
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2004 |
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2004
Established formal procedure for direct services provided by TFRD by formulating application forms and constructing a database.
Opend up performing classes for painting and singing begin.
Continued rare disease family growth groups and symposiums.
Co-produced TV series “Born Fighters” with Public Television Service Foundation.
Continued advocacy and subsidy for expanded newborn screening for aborigines community and underprivileged families.
Held employment support group and employment counselor training program.
Promoted volunteer training and accreditation programs.
TFRD 5th anniversary and activity.
Assured patients’ medical rights by advocating a budget exclusively for rare diseases patients.
Launched a long-term care program
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2003 |
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2003
Promoted amendment of “Rare Disease and Orphan Drug Act”.
Subsidized expanded newborn screening fee for aborigines community and under-privileged families.
Launched rare disease family growth groups.
Launched firefly family visits.
Promoted free flu vaccine for rare disease patients.
Conducted employment programs for rare disease patients .
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2002 |
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2002
Rare diseases be categorized as Catastrophic Illness.
Promoted second-generation newborn screening program in Kinmen.
Launched campus publicity programs.
Reinforced “National Rare Disease Service Network”.
Held “Nutrition Classroom” workshops.
Published series of books on rare diseases.
Conducted an employment study on rare disease patients .
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2001 |
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2001
Established genetic counseling network and training program for genetic counselors.
Promote expanded newborn screening performed by Tandem Mass Spectrometry.
Established “National Rare Disease Service Network.”
Established “International Diagnostic Testing Referring Center”
Enhanceed communication with international Rare Disease communities
Promote to include rare disease under the protection of Physical and Mental Disability Act . |
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2000 |
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2000
Offered life and medical subsidies.
Enhanced the implement of Rare Disease and Orphan Drug.
Launched advocacy campaigns to organizations and individuals.
Encouraged research projects.
Subsidized patient groups and activities related.
Fostered patient groups. |
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1998-1999 |
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1998-1999
Simplified the application procedure for Orphan Drugs.
Advocated the medical reimbursement covered by National Health Insurance.
Advocated the adoption of Rare Disease and Orphan Drug Act.
Offered life and medical subsidies.
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