Rare Disease Welfare Center


1. Gene Education Center

For the public to better learn about rare diseases, thereby embracing patients with rare diseases, Rare Welfare Center (hereinafter referred to as “the Center”) sets up the Gene Education Center, where textbooks of popular science and stories of life education are adopted, coupled with fascinating interactive games and activities. The Center is open to all primary and secondary schools across Taiwan for field trips and off-campus studies. Social groups and businesses are also welcome to book guided tours. It is hoped that this facility can serve as a base for popular education on rare diseases and genetic studies. The credit goes to Academician Prof. Yuan-Tsong Chen for his great support and sponsorship to make this center possible.

2. Welfare Device Service Center

As the disease develops, patients with rare diseases may often experience gradual degeneration of limbs, and they could only retreat to using wheelchairs, before spending most of their time in bed. To provide patients with quality life with dignity, while reducing the burden on caregivers, this Center adopts an optimal care environment for patients with moderate and severe conditions. With complete home bathing equipment, mobile assistive devices, and small soothing items, not only caregivers, but care receivers are given a perfect venue for relaxation. These will not be possible without the Fubon Charitable Trust for its strong support, and Jochu Group for sponsoring mobility assistive devices and electric beds. With these resources, there can be the best practices of long-term care for families with patients with rare diseases.

3. Time Capsule

The Time Capsule is located in the center of the premises, with a set up designed into a time tunnel for visitors to learn about the founding ideas of Taiwan Foundation for Rare Disorders (TFRD), history and major events, and key events for our patients. All the information is categorized under five themes - Legislative Initiatives, Patient Services, Rare Disease Instructions, Support Groups, and Prevention & Management. For the achievements laid out in Time Capsule, the honor goes to all the directors and supervisors from TFRD and their full support.

4. Conference Hall

The Conference Hall is the largest indoor space in the center. It is suitable for holding conferences, lectures, sharing sessions, movie appreciation, speeches, performances, etc. It has the function of social education and publicity. It is a place where the public can communicate with patients at close range of interaction.

Special thanks to Fubon Charitable Trust, Ms. Sandra Yu from Zhi-Bang Investment, Chen-Yung Foundation, and Everlight Cultural Foundation for donating audio-visual and audio equipment to this conference hall.

5. Fitness Classroom

Equipped with professional fitness / rehab facilities, the Fitness Classroom is designed for patients of different levels of disabilities, with trainers and therapists on hand. Caregivers can also take advantage of the facilities to exercise and alleviate stress.

The Fitness Classroom allows patients with various disabilities to exercise without pressure under the guidance of rehab therapists. For users training their cardio, limb stretching, children taking gait training, and family members who have been taking care of patients for a long time, everyone is welcome to exercise at this venue. This setup comes from the generous support from the founding members of TFRD - Chairman Chung-Teh Lee and his wife, lawyer Jaclyn Tsai, as well as the help of Rotary Club of Kaohsiung. From now on, going to the gym can be common for patients with rare diseases just as it is for everyone else.

6. Snoezelen Room & Sensory Integration Classroom

Facilitated with sensory equipment and toys, the Sensory Integration Classroom is designed for children of development delay and sensory integration dysfunction with trainers and therapists.

The Snoezelen Classroom is a relaxing space for children of developmental delay that help reduce agitation and anxiety, and encourage communication between users.

The Snoezelen Room & Sensory Integration Classroom features a small playground equipped with a parent-child playroom and outdoor inclusive equipment; this allows children with rare diseases to play and grow in a safe environment. For this setup, a debt of gratitude is owed to PX Mart and PX Mart Foundation for their sponsorship and support.

7. Counseling Center

The lives of families with rare disease patients are often intertwined with negative emotions and complex feelings of loss. Over the years, our psychological counseling service program has helped many patients overcome difficulties. The Counseling Center is a safe and warm space and is divided into three areas: Group Counseling Rooms, Individual / Family Counseling Rooms, and Relaxing Space. Through the guidance of therapists and social workers, individuals will have an in-depth observation of their issues such as challenges in life, family relationships, and adaptability to diseases. There is also a two-day group session where visitors can have more exchanges of ideas and experience with each other.

8. Healing Garden

The Healing Garden is a space extended from the Counseling Center, furnished as a quiet and secluded space. After having therapy sessions, visitors can rest in the garden and reflect on what has been discussed over the sessions, reclaiming a momentum for life. The entire area is barrier-free and has spaces designed for gatherings, where patients and their families are more than welcome to spend some quality time. This area is made possible with the support from Corporate China Gaitian Jing Guang Buddhist Meditation Association, Rotary Club of East Taipei, Excelsior Group, and an array of charitable businesses; because of them, love can be passed down.

9. Multi-Purpose Classroom

The Center also features three Multi-purpose Classrooms, each of which can accommodate 25 to 30 people. The rooms are equipped with audio-visual equipment, movable tables and chairs, and wheelchair-friendly lift tables. These spaces are suitable for various activities and programs, and can also be used along with other relaxing spaces, outdoor green spaces, and classrooms for different purposes. Over 40 associations related to rare disease patients and social clubs have been invited to hold courses and lectures at the Center. A one-day trip of various events can be arranged, due to the Center's proximity to nearby attractions such as Leofoo Village, Window of World, and several tourist farms.

For this space, the credit goes to Chairman Derek Chen from Chenco Holdings and Ms. Paula Ma for adding diversity to the space arrangement of the Center.

10. Parent-Child Playground & Inclusive Space

For children with rare diseases to have a good time, the Parent-Child Playground & Inclusive Space are customized for children with rare diseases to meet their needs. In addition to being a space for children and their siblings to just have fun, the playgrounds also serve as an extension of the Sensory Integration Classroom for early intervention and rehab therapies. Children are welcome to sign up for exercises designed for both gross and fine motor skills, as well as for movements required in daily life.

Combined with the outdoor inclusive playground, regular children and those with rare diseases are encouraged to play together in an environment that is diverse, stimulating, safe, interesting, and interactive. The Inclusive Playground features barrier-free spinners where wheelchair users can sit in front of each other to experience the speed and excitement. There are also nest-shaped swings that allow children with poor head control to have fun without fearing of injuries.