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20th anniversary
Transforming Rare Lives with Love -20th Exhibition


  

The feature exhibition for rare diseases- Transforming Rare Lives with Love - 20 Years of Work is held at the North Tobacco Factory at Songshan Cultural and Creative Park from October 23 to 30, 2019. Here you could find a basic introduction to genetics and history of the TFRD. Also, the Rare Lives Area incorporates materials in life education, hoping that the public can embrace rare disease patients with sympathy, an open mind, and support. The exhibition is also complemented by Rare Artist Gallery, Rare Story Area, Rare Show Stage, VR Experience Area, and Rare Market where visitors can immerse themselves in art and music to experience the life of rare disease patients.

Rare Condition
A rare disease is any disease that affects a small percentage of the population, mostly caused by genetic defects or congenital disorders. There are 25,000 genes in the human body, and any genetic abnormalities could be the cause.

In Taiwan, there is a group of patients with rare diseases, which are not contagious, but could cause disabilities and poor health status. Now, we would like to invite you to an adventure with the Warrior Firefly- Shiny, into the world of rare diseases. Through the graphic illustrations and games, you will have a better understanding of genes and rare diseases regarding the following topics: (1) Chromosomes; (2) Chromosomal Disorders & Rare Diseases; (3) Genetic Defects; (4) Treatments for Rare Diseases.


Rare Artist Gallery
We can't decide how long we live, but we surely can make the most of it!

Living with diseases throughout their entire life, rare disease patients view the world through a unique lens, which can be seen in their art creations. In early 2004, Wang, Lien-Yeh and Bai, Jiing-Wen started drawing classes for rare disease patients, both children and adults. Every Saturday, participants immerse themselves in creation and transform their inner vitality into reality that shines so brightly. Every piece of work is the result of their wholehearted effort.

In 2016, the Taiwan Post Association joined the line to sponsor every rare disease artist in pursuing their dream of art. This year's exhibition features a variety of works, through which you can see how ideas come into existence in patients’ mind and furthermore, the distinctive landscape in their eyes. Rare Story Writing can be healing as well as a source of personal growth. Most rare diseases are present throughout the patients’ lives. Although they have never been cured, some bittersweet or beautiful moments have become the material for their life stories.

As TFRD continues to hold various activities, providing a comprehensive and insightful writing experience for everyone to share feelings in their own words, it is hoped that these stories, whether from personal experience or from others’, can flourish gracefully into full bloom.


VR Area
Unforgettable Memory- A dream come true for fighters that break boundaries every day.

On holidays, people enjoy hanging out with family and friends, but something as simple as that can take quite an effort for rare disease patients with disabilities. Thanks to the generous help from James Lee, CEO of TripMoment, a VR company, and the sponsorship of Joseph Lee from Lee, Tsai & Partners Law Firm, a long-time and strong supporter of TFRD, patients can now experience the latest VR ride. Without traveling far, they can explore the beauty of the world as well as various cultures in Taiwan and abroad. Through humanized new VR technology, countless dreams that were not possible can finally come true. Put down your heavy burden from daily life and come with us onto a virtual adventure.


Rare Market
Due to weakened muscle strength and movement limitation, Hsuan puts in every bit of her effort, trying to string up the beads.

Because of muscle pain, Kiki immersed herself in the world of essential oil, hoping to soothe her pain through enchanting fragrance.

To look after her child with rare diseases, May makes use of fragmented time to make creative patchwork one needle after another, and she also produces patchouli herb oil from her own hands.

In the hope of supporting these families, TFRD launched the Rare Diseases Career Promotion Service in 2005. Unlike regular sheltered workshops for the disabled, this program encourages patients and families to build their own brand based on personal skills and talents. It is our pleasure to invite you to take a look at their innovations and share their delight as well as courage. Also a good idea to take home a craft or two, so that your care and love can be passed on to rare diseases families.

◎Photo Gallery: 
http://www.tfrd.org.tw/tfrd/album/content/id/778
http://www.tfrd.org.tw/tfrd/album/content/id/779

◎Video References: 
https://www.youtube.com/watch?v=rttCa_3Cd8E