The following has been shared by Anna Nicolaou:
A diagnosis is just a label but the life behind it is a realty that only a few can understand. For me that reality is Congenital Hyperinsulinism; a journey marked by relentless resilience and one which completely transformed not just my life but also the lives of so many people all over the world.
Today, we shift the focus from the struggle to the solution. We are moving forward towards a future where research is not just a line item but also a lifeline. We are moving towards a world where inclusion is not a gesture but the standard practice. Where a child with HI can step into a classroom or a playground and be met with understanding, rather than uncertainty and where that child can dream big without having to think of the barriers.
Currently, there are 300 million people in the world waiting for equity in a system where 95% of rare conditions still do not have a cure. Our stories are ‘More Than You Can Imagine’, and through the HI Global Registry (HIGR) we ensure they become more than stories — they become evidence. HIGR transforms the lived reality of our community into data something that researchers never had before, giving shape to what has long been invisible and making it visible. We are the zebras rewriting the medical textbooks, and HIGR is the proof of our reality and the roadmap guiding the treatments still to come.
In the rare disease community, we do not just live with the odds; we fight against the odds on a day-to-day basis to challenge and to change them. We are the advocates pushing for the next generation of glucagon therapies, the families participating in clinical trials or sitting on patient advisory boards for new medication and we are the voices ensuring that rare will never mean forgotten about.
On the 2026 Rare Disease Day, we are proving that our lives are beyond hospital stays and constant tests, glucose monitors or CGM, we are athletes, artists but above all, we are dreamers. The diagnosis is a part of our story but it is not the whole story nor the ending; it is simply the beginning. We are raising our voices in order to bridge the gap that exists between representation and impact. When we stand united, we are not just a percentage of the population but a power, which cannot be ignored.
We are rare, we are many and we are moving forward
Despite every obstacle, which has come, and every obstacle, which will come
We will fight together as one
