All Children Have Equal Rights. Children Living with Rare Diseases Are No Exception. An Interview with Veronica Popa

Childhood should be a time of discovery, laughter, and learning. Yet for many children living with a rare disease, it often begins with uncertainty — long diagnostic journeys, limited access to care, and barriers to inclusion.

**World Children’s Day** is a reminder that every child, no matter how rare their condition, has the same rights: to health, education, play, and belonging. It’s a day to celebrate progress, but also to recognise how much remains to be done to ensure that illness never limits childhood.

For this occasion, we spoke with Veronica Popa, Digital Patient Engagement Manager at EURORDIS – Rare Diseases Europe and mother of a child living with a rare condition. Together, we spoke about parental denial and courage, the flaws within our systems, the long road to real inclusion, and the simple truth found in a child’s story about a fish.

World Children’s Day celebrates the rights of every child to health, education, and inclusion, and reminds us of our shared responsibility to build a better world for all children. As both a mother of a child living with a rare condition and a patient engagement expert at EURORDIS, what does this day mean to you personally?

A day dedicated to celebrating the rights of children is a day to honor our progress and reaffirm our commitment to ensuring every child’s right to health, education, and inclusion worldwide. It is also a day to look honestly in the mirror, acknowledge our shortcomings, and learn from them so that we can do better and be better for our children and for all children around the world. Above all, it is a day to recognize our shared responsibility to protect and nurture the new generations and the future they will build.

Early diagnosis can change a child’s entire life. In your view, what needs to happen in research, healthcare, or society to make early diagnosis a real right for every child? How can initiatives like Screen4Care help move us in that direction?

Screen4Care is a strong example of collaboration among diverse stakeholders working together to overcome the challenges that hinder early diagnosis. Newborn screening is a solution that could save millions of lives across Europe, yet it is still not prioritized enough at the member state level. There is hope that Screen4Care will help change this.

However, the policy component cannot be ignored. Even with proven benefits, member states must still decide which diseases to test for. There are countries like Italy, where newborn screening covers almost 50 diseases, a relatively small number compared to the more than 6,000 known rare diseases, but still an important and meaningful effort. Then there are countries like Romania, where newborn screening is conducted for only three diseases. The disparity is striking.

There are other aspects that may support early diagnosis and that Screen4Care is actively addressing, such as the project’s privacy-by-design app. This app aims to help patients, or parents of patients, keep symptom journals that can be transformed into medical reports. It can translate everyday language from these journals into medical terminology that healthcare professionals can better understand and relate to, thus bridging a communication gap between patients and clinicians — a gap that often contributes to delayed or incorrect diagnoses.

From a social perspective, in my experience, one important factor that can lead to delayed diagnosis in children is parental denial — the denial of symptoms. Accepting that there is something different, and potentially life-altering, about one’s child requires immense strength and courage. In societies that do not support difference and often equate it with being “less,” parents understandably fear exposing their children to potential discrimination or marginalization.

We need to do better. We need to be more understanding of one another’s challenges in life.

Beyond healthcare, children with rare diseases deserve the same opportunities as any other child. In your view, what does protecting their right to play, learn, and belong look like in everyday life?

I would sincerely describe it as a battle, sometimes an uphill one. It is a sustained effort to remind people that children’s rights and disability rights are human rights. From classroom presentations and petitioning authorities to participating in consultations for new policies and everything in between, it often feels like a full-time job.

I remember an activity I did in my son’s class, where I tried to explain through storytelling that being different does not mean being less. The main character was a fish, and one of the girls raised her hand and said that just because it cannot speak does not mean it has nothing to say or that it does not communicate. I was deeply moved, because these are complex ideas that many adults struggle to grasp, yet the children understood them as if they were the most natural thing in the world.

Regarding the education system, there is currently turmoil within the teaching community about inclusion. I recently read an article claiming that inclusion is the single worst thing that has ever happened to the education system. I was surprised and saddened at the same time. Although legislation exists to protect the rights of children with disabilities in relation to school access, the implementation often looks good only on paper. Very few efforts have been made to truly integrate inclusion into the education system, and funding has been insufficient. Teachers are overwhelmed and unsure how to adapt curricula for children with special needs. Many do not know how to interact with children living with rare diseases or disabilities.

In this context, I was saddened to see that the frustration of overwhelmed teachers was directed at the children rather than at the flawed system itself.

As a society, we still have much to learn about kindness and inclusion. Yet every challenge hides an opportunity. Now that the conversation has begun, perhaps not in the ideal way, but it has begun, there is hope that solutions will be found by considering the views and needs of all relevant stakeholders.

You’ve spoken openly about the challenges of inclusion and access to education. What kinds of structural or policy changes are most needed to make schools and communities truly inclusive for children with rare conditions?

The short answer is a change in mindset. Most children living with rare diseases also live with disabilities, and this remains the most misunderstood and challenging aspect of their social integration.

Historically, there have been three models of disability: the Moral Model, where people with disabilities were seen as having no agency and were viewed as passive recipients of charity; the Medical Model, where people with disabilities were dehumanized and regarded solely as problems to be solved; and the Social Model, where people with disabilities are recognized and respected as individuals with full human dignity. As a society, we should strive toward the Social Model, but we are not there yet, not even in theory or policy.

If you have children, think about their school or kindergarten. Would a child with a disability have physical access to it? What about the apartment building you live in? Would a child with a disability be able to enter and move around freely? And what about public transport or the local playground?

Achieving change will require a profound shift in mindset, along with time and determination, particularly political will. But I believe that our society today is capable of making this happen.

From your perspective, where do we stand today in terms of advocacy for children living with rare diseases — at both national and European levels? What signs of progress do you see, and what gaps still remain?

There are strong organizations at the European level that advocate for people living with rare diseases or disabilities. EURORDIS is one of them, defending the rights of people living with rare diseases, not only children. However, considering that more than 80% of rare disease patients are children, this puts things into a very different perspective.

Unfortunately, at the European level, the European Commission’s support for civil society is waning. Although civil society organizations remain determined and big-hearted, their advocacy efforts will be severely affected. What now appears to be a cost-reduction measure might, in the long term, cost the European Union far more than money — in the form of policies and decisions that fail to align with society’s goals and priorities, ultimately eroding citizens’ trust in the system.

At the local level, in Romania, patient advocacy exists but is still in its infancy. There is a pressing need for more advocates, greater capacity building, and stronger civil society involvement in every aspect of the decision-making process.

Looking ahead, on this World Children’s Day, what is your message to policymakers, educators, and healthcare professionals about building a world where no child with a rare disease is left behind? It is difficult to find a common message for policymakers, educators, and healthcare professionals. However, if I were to try, it would be a call to ensure the meaningful involvement of all representative stakeholders, including patients and citizens, in every activity they undertake, every point they make, every position they support, and every project they design.