Be Connected
Stichting Power Of Reflection – Interview Weesgeneesmiddelen.nl
3 October 2025
When your child has suffered dozens of bone fractures at a young age, sometimes from something as simple as changing a nappy or a minor misstep in the playground, your life changes forever. The fractures are just one of the many consequences of a collagen connective tissue disorder. Cindy Wan has experienced this first-hand, and the obstacles she encountered motivated her to make a difference for patients.
Collagen defect
Collagen is an essential protein that acts as a kind of glue, holding the entire body together. It gives bones strength, makes the skin elastic, helps wounds heal and ensures that organs work together. If this mechanism does not function properly due to a genetic defect, it can have serious physical consequences, ranging from bones that break easily to wounds that heal poorly. These consequences can leave people dependent on a wheelchair.
It is a protein that holds everything together, and if that does not function, everything literally falls apart.
But the consequences go beyond the physical. These conditions also affect patients' mental well-being and social lives. Chronic pain and fatigue are often invisible, which means that patients are often not taken seriously. A child who has broken something dozens of times learns not to complain, and that is precisely why the severity is underestimated.
A life full of hurdles
For people with collagen connective tissue disorders, everyday life is full of challenges. Spontaneous outings are often out of the question. Even simple tasks can be difficult. Take using a debit card at the supermarket, for example: ATMs are often too high for wheelchair users. This makes it difficult to enter a PIN code or see whether the correct amount is displayed on the machine.
School and work are also not a given. Fatigue, injuries and limited accessibility make it difficult to complete a degree on time or hold down a full-time job. The financial and social consequences are significant: dependence on parents and limited career opportunities are the rule rather than the exception.
‘A spontaneous outing is impossible. Is it wheelchair-friendly? Is there a lift that works? You can never be entirely sure.’
The fragmentation
In addition to the physical challenges, there is also a systemic problem. Each specific collagen connective tissue disorder has its own small patient association, often with only a few hundred members. As a result, there is no collective voice and valuable knowledge is lost.
Cindy Wan sees this problem up close and decides to do something about it. She talks to doctors, researchers and other parents, and finds that the source of these conditions is the same: a defect in the gene that produces collagen. Yet too much attention is paid to the symptoms alone and not to the cause. The division based on symptoms leads to reduced communication between the groups and, as a result, a lack of effective treatments.
Power of Reflection: one voice for thousands
In 2021, she established the Power of Reflection foundation. What began as an initiative for people with brittle bones grew into a platform for anyone with collagen connective tissue disorders by 2023. The foundation now represents more than 4,000 patients in the Netherlands, making it a powerful counterbalance to fragmentation.
‘We lack cross-pollination and bridge builders. That is why the Power of Reflection foundation was established.’
The aim of Power of Reflection is clear: to raise awareness, pool knowledge and strengthen the voice of patients. Through peer support days, people share experiences and practical tips, and find support in each other. The foundation also focuses on education and awareness campaigns, including through social media and collaborations with other organisations. Cindy emphasises the power of the experiences of people living with these conditions, because only by making real stories visible can we work towards a more inclusive society.
A call for change
Through Power of Reflection, Cindy advocates for more personalised care. Patients should receive accurate diagnoses more quickly, and practitioners should be better informed. Greater cooperation, less bureaucracy, and more attention to psychosocial aspects are essential.
The foundation aims to use personal stories to make practitioners and researchers aware of the reality of patients' experiences. By linking these stories to research and policy, an equal dialogue is created and better choices can be made.
It is often not unwillingness, but ignorance that leads to wrong decisions.
A realistic dream
Cindy's greatest wish? That no patient with a rare condition ever feels unseen or misunderstood again. That everyone can lead a happy life, with equal opportunities and the right care. It's a dot on the horizon, perhaps far away, but certainly not impossible.
English (UK) 
Nederlands