By Wang Yiou, Founder of China Dolls

For nearly two decades, I have had the privilege of working with thousands of people living with OI in China. And as the founder of the China-Dolls Center for Rare Disorders, I have learned that statistics alone never tell the full story. Every percentage represents a child with OI trying to get to school, an adult searching for meaningful work, or a family wondering what the future will hold.

Our three surveys on living with OI in China done in 2007, 2017 and 2025 provided encouraging evidence that change is possible. It also reminded us how much work we have left.

The progress is real. School rejection rates have fallen significantly, showing that more schools are opening their doors to children with OI. Accessible facilities are becoming more common, and more young people with OI are completing higher education than ever before.

However – more than four in ten people with OI still cannot attend school regularly. For many, fractures interrupt their education. Others have no accessible transportation, while many schools remain physically inaccessible. Something as fundamental as using the restroom continues to be a daily obstacle. Some children avoid drinking water throughout the school day simply because they cannot safely reach or use the toilet. This is not merely an accessibility issue; it is a question of dignity.

More than fifteen years ago, our organization met a primary school student named Linlin. Every day, his father carried him to school. After learning that swimming would strengthen his son’s body, he dug a swimming pool outside their home so his son could exercise safely. Today, Linlin has graduated with a degree in Computer Science and is interning at the China-Dolls Center.

You might ask, why an intern at the China-Dolls Center? The answer is simple and realistic: there are too few job opportunities elsewhere. Education should open doors, but for many adults with OI in Asia, those doors remain closed.

Less than half of adults with OI in China are employed. Physical limitations certainly play a role, but they are only part of the explanation. Society often fails to recognize the capabilities of people with disabilities or to provide flexible working arrangements that allow them to thrive. Many people with OI possess valuable skills as programmers, designers, translators, entrepreneurs, and business owners. What they often lack is not talent, but opportunity.

The China-Dolls Center has partnered with companies to develop suitable jobs and provide skills training. Over 500 people with OI in China now work online. Of course, many others work offline as graphic designers, translators, programmers, etc. Some have opened cafes, dumpling shops, or small stores.

Access to healthcare is one of the biggest obstacles for OI families. While many families manage with relatively modest routine medical expenses, others face overwhelming financial burdens. Nearly one-third of respondents experienced misdiagnosis before receiving the correct diagnosis. Some families even found themselves suspected of child abuse because repeated fractures were misunderstood. Genetic testing, essential for effective diagnosis and management, remains financially out of reach for too many.

As discussions about precision medicine and innovative therapies continue around the world, affordability cannot remain an afterthought. Scientific breakthroughs have little value if the people who need them most cannot access them.

A new challenge is also emerging as people with OI live longer lives. Better medical care means that many individuals are now reaching middle and older age, but society has not yet prepared for their long-term support. Most older adults with OI have no realistic retirement plan and expect to rely almost entirely on home-based care. Their greatest concern is not simply aging, but aging without security or independence.

Fortunately, there is still hope. Over the years, we have witnessed remarkable transformations through China Dolls programs that encourage independent living, leadership, and community participation. Participants have become entrepreneurs, artists, public speakers, and advocates.

The statistics show us the direction and point toward three clear priorities. We must build genuinely inclusive systems that support people throughout education and employment. Secondly, healthcare must become both accessible and affordable, from early diagnosis to innovative treatments. And finally, lifelong support systems must evolve alongside changing needs, ensuring that people with rare diseases can live with security throughout every stage of life.

Change is happening – we have witnessed it in China. But no single organization or country can tackle these challenges alone.
A grandmother caring for her granddaughter with OI once said, “I’m not afraid of the hard work. I’m only afraid that after I’m gone, no one will care for her like I do.”

Her words extend far beyond one family or one rare disease. They challenge all of us to ask what kind of society we want to build. This worry touches every one of us. The measure of our civilization lies not in how we treat the strong, but in how we care for the vulnerable. Let us work together – across disciplines and borders – to build a world strong enough to catch its most fragile members.

Based on Wang Yiou’s talk in OI2025 – shortened and modified with AI.