Rare Disease Art Exhibition in Beijing | Paper Crane × Viva la Vida
When most people hear the words “rare disease,” they may only see fragmented facts, medical terms, or distant stories. What they often miss are the full, vivid lives behind those diagnoses—people who love, dream, create, and reflect on life just like anyone else.
That was the heart of “Out-of-Order Paper Cranes,” a rare disease art exhibition in Beijing hosted by the student-led charity group Paper Crane and supported by Viva la Vida, the Beijing Pain Challenge Public Welfare Foundation, WINGlish, and GalleryHouse.
The exhibition opened on August 25 at the Design Center of the International School of Beijing in Shunyi and ran through September 24. Its space was inspired by the creases on a sheet of origami paper. Divided into four unfolding “folds,” the exhibition guided visitors through photography, painting, sculpture, and public participation—each fold adding another layer to the story of rare disease patients in China.
The exhibition design began with a simple but powerful image: the paper crane. A paper crane is made through folds—some deliberate, some seemingly disruptive. For people living with rare diseases, life can also feel folded, interrupted, or reshaped. Yet the crane still holds its form and its ability to fly.
That metaphor shaped the entire exhibition. Rather than presenting rare disease only as a medical challenge, “Out-of-Order Paper Cranes” presented it as a human, artistic, and collective experience.
First Fold: 30 Portraits, 100 Rare Diseases
The first section displayed 30 photographs from the “Attention” project by Xiong Xianjun, former director-general of the National Health Commission.
With support from the China Alliance for Rare Diseases and the Beijing Pain Challenge Public Welfare Foundation, Xiong spent two years traveling across China. He visited 100 people living with 100 different rare diseases and documented them through photography.
Each photograph carried two threads: Portrait and Gaze. Standing in front of the works, visitors did not simply see patients. They saw complete, living souls—people with dignity, personality, and stories worth remembering.
Second Fold: Patient Paintings and Life Portraits
The second fold brought together original paintings provided by the Beijing Pain Challenge Public Welfare Foundation, along with “life portraits” submitted by the rare disease community.
The works ranged from colorful paintings to traditional Chinese ink art. Each piece was a dialogue—between the artist and the world, between pain and imagination, between what others see and what the artist knows.
Third Fold: Resin Paper Cranes
In the third section, resin paper cranes hung at different heights. Some were high, some low, some seemingly off balance. Together they formed a quiet but striking installation.
The message was clear: lives that others might describe as disrupted still possess the power to fly.
Fourth Fold: A Message Board
At the exit, visitors found a message board. They were invited to write notes on sticky paper—words of care, recognition, and hope. The organizers promised to pass these gentle messages on to the artists.
It was a simple act, but it turned the exhibition from something visitors observed into something they helped complete.
Extended Activities: Taste, Support, Volunteer
The exhibition also included several extended activities designed to deepen understanding and participation.
Special Medical Formula Tasting
Visitors were invited to taste the special medical formula that patients with methylmalonic acidemia drink every day. Because of their condition, their diet is restricted. The “strange” taste many visitors noticed is part of daily life for these “lemon babies.”
Out-of-Order Paper Cranes Charity Sale
Inspired by elements from patient artwork, the team designed mugs, charms, art CDs, and other merchandise. All proceeds were donated to the China Rare Disease Medical Assistance Project.
WINGlish Partnership
In partnership with WINGlish (Touch Childhood Technology), visitors could join a volunteer team. Online public-interest courses were offered to provide equal learning opportunities for children with rare diseases, covering English, math, and other subjects.
Visit Information
Time: August 25 – September 24
Location: Design Center, International School of Beijing, No. 10 Anhua Street, Shunyi District, Beijing
Visitors were asked to enter through North Gate 1, where on-campus parking was available. The exhibition was located in the Design Center: enter through the main door and walk straight.
Because the exhibition took place on a school campus, off-campus visitors needed to register in advance through the visitor questionnaire:
Visitor contact: Joseph Stewart
Department: HS (High School)
Work email: jstewart@isb.cn
Visitor type: General Visitor
Purpose of visit: “attending the exhibition”
Other information could be filled in as appropriate. For questions, visitors could call:
010-8149-2345 ext. 1101
We looked forward to welcoming everyone.
About the Brand
Viva la Vida (VIVA) is a global cross-cultural art brand spanning 60+ countries. We believe that art is a universal language capable of recording life stories, fostering cross-cultural understanding, and driving meaningful social change. Through our signature question—"What is your life?"—we invite individuals from every background to share their stories through a single painting.
Over the past eight years, we have partnered with global leaders including the United Nations, Coca-Cola, and Tencent to host 400+ events and collect 20,000+ life portraits. Each artwork becomes a bridge—transforming personal expression into collective cultural dialogue.
Paper Crane is a student-led public-interest organization founded in 2023. It is currently composed of current students from five universities in China and the United States. We are a nonprofit organization in long-term partnership with the Beijing Pain Challenge Public Welfare Foundation, dedicated to helping people living with rare diseases in China. “Out-of-Order Paper Cranes” is one of our initiatives. It aims to enhance public understanding, awareness, and support for rare diseases through a combination of online and offline publicity, thereby promoting a more inclusive social environment for people with rare diseases.
Gallery House is an art club at the International School of Beijing. It is a platform for students to exchange artistic ideas and express their passion for art, and it also hopes to help create a better campus community through art.
Illness Challenge Foundation originated from the Ice Bucket Challenge and is the first public welfare foundation in China initiated by people with rare diseases. It is committed to jointly addressing the urgent problems facing the rare disease community through patient services, organizational support, industry development, innovation platforms, public advocacy, and policy advocacy, and to building an equal and respected social environment for people facing pain and challenges.
WINglish (Touch Childhood Technology) is a youth-led nonprofit organization dedicated to ensuring that marginalized groups also have access to educational opportunities. Through interactive teaching, we aim to help students with disabilities—including blind individuals, people with hearing impairments, and rare disease patients—improve their learning abilities, broaden their global perspectives, and inspire their interest in learning. We hope to support each other toward shared success, learn through teaching, grow through learning, and achieve through teaching.
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