Zozan Sewger Kvist: For 25 years the families have been telling us the same thing: the system doesn’t connect.
The breakdown is most evident in health care, especially when transitioning from pediatric to adult care. But it also happens when patients are transitioning between schools, social services and medical teams. No one is looking at their care from a holistic point of view. Families become their own project managers. They are the ones booking appointments, chasing referrals, explaining the diagnosis again and again. It’s a heavy burden.
That’s largely why our organization exists. We provide families with the knowledge, networks and tools to navigate the system and understand their rights. But there’s a limit to what one organization can do. In a perfect world, these functions would already be embedded within public care.
Without clear national coordination, it becomes much harder to monitor whether families are actually receiving the support they are entitled to.
PS: Access to rare disease care varies widely within many European countries and Sweden is no exception. In practical terms, what do those regional disparities look like?
ZSK: Swedish families have the same rights across the country, but regional priorities differ. That leads to unequal access in practice. For example, areas with university hospitals tend to have stronger specialist networks and rehabilitation services. In more rural parts of the country, especially in the north, it is harder to attract expertise, and families feel that gap directly.
In practical terms, that can mean something as basic as access to rehabilitation. In some regions, children receive coordinated physiotherapy, speech therapy and follow-up. In others, families struggle to access rehabilitation at all. And that’s a big issue because a lot of Sweden’s health care runs through rehabilitation — without it, referrals to other services and treatments can stall.