Keep moving forward: New Services and New Vision

In 2008, global economy crisis caused the shrinking economy, and up soaring unemployment rate. NGOs such as TFRD which rely on public donation also suffered from the reduction of donation income. However, in a stringent situation like this, many rare disease families that have heavy financial burdens need more of our help. Therefore, TFRD not only continues to provide existing services but also opens up many new services. We will serve as the best friend of rare disease patients and help them to overcome the difficulties. 

Besides existing services such as patients’ subsidy, genetic and nutritional counseling, rare disease home visit program, expanded newborn screening, transferring specimen for diagnosis and patient activities, we expanded some of the services such as:
 
1. opened performing classes and established Heavenly Melody Chorus in Taichung and Kaohsiung branch offices, and had a concert tour in Taichung and Kaohsiung attracting more than 2,000 audiences; 2. held more than 10 experience trips, one-day trips, and summer camps; 3. home visit service team combining physical therapists, speech and language therapists, nutritionists, occupational therapists, psychology counselors and volunteer workers visited 47 patients and help patients learn some physical or occupational therapy movements by themselves, or learn correct dietary control and through home visits, helped us to become more adapted to patients’ needs . 

Furthermore, we created several new services in 2008. 
First, to help make access to special formula or low-protein foods easy for the patients, TFRD collaborated with importing agents and printed low-protein food coupons to the patients for free. Patients can purchase low-protein food with the coupon anytime and no longer have to worry about the stock and access to special food. 

Second, to bring our care to patients, we established a help-line which our trained counseling volunteers would make regular phone visits to our patients. During the Dragon Boat Festival, and the Mid-Autumn Festival when in tradition families get together, we visit patients and bring them gifts so they may feel not so lonely. 

Third, TFRD made a step forward to our goal of helping patients to live a happy and quality life, we established a Rare Disease Group Home Project. Initially there will be 3 patients living together and a hired full time caregiver in facilitation with various supports and services. In the group home, patients and their families can have independent living but at the same time look after each other. 

Last but not the least, Taiwan Tissue Bank is finally moving now. In order to accelerate future research progress on Rare Diseases, TFRD has initiated in building the “Taiwan Rare Disease Tissue Bank”, a critical mass of collections and facilitating the exchange of biological materials. Through guaranteeing quick and easy access to samples, more research can be conducted to improve existing treatment and diagnosis. After building consensus and gathering suggestions from various aspects, we have decided that this tissue bank should establish based on a strong collaboration between government, patient organizations, medical and academic community. Presently we are engaged in developing its mechanism and approach along with rigorous evaluation and consultation. In addition, we are also preparing protocol for external ethical review, and are scheduled to start sample collection this year. Legal and ethical issues regarding tissue banking will also be carefully taken into account, to ensure rights and interests of our patients. 

Looking back, though fund-raising is difficult, we tried our best to serve our patients. We are still optimistic and looking forward to year 2009 for we will continue to transform our mission into real actions and that will help patients and families living with rare diseases.