The Spanish Federation of Rare Diseases (FEDER) has wanted to make visible, on the occasion of World Mental Health Day, the emotional burden that people living with rare diseases or without a confirmed diagnosis bear, as well as their family environments.
Under the slogan "Match with your mental health," this year's campaign by Mental Health Spain focuses on the psychological well-being of children, adolescents, and young people, emphasizing that taking care of emotional health from childhood and youth is also a way to protect the future.
In the field of rare diseases, FEDER emphasizes that this perspective is especially necessary. "Receiving a diagnosis or living with the uncertainty of not having one means facing a process often marked by ignorance, the lack of specific treatments, and the need to adapt to a new reality," explains the organization.
As detailed by the Federation, the journey to obtaining a diagnosis can be prolonged for years and be tinged with uncertainty and anxiety. This is compounded by the consequences arising from the absence of specific therapies, the obligation to reorganize daily life, and the feeling of isolation and loneliness caused by social ignorance and the low prevalence of these diseases.
In this scenario, the entity has recalled the need to integrate psychological care within a comprehensive healthcare approach and has highlighted the 3,306 attentions provided by its Psychological Care Service during 2025.
Among the main reasons why people turn to this resource are the promotion of self-care, the resolution of conflicts in the family environment, the equitable distribution of caregiving tasks, adaptation to the loss of autonomy, and the management of chronic pain.
The service also includes support after the communication of a recent diagnosis and during the so-called "diagnostic odyssey," two phases in which psychological support is key to managing the uncertainty and vital changes that each situation entails.
Coinciding with this World Mental Health Day, FEDER emphasizes that "talking about mental health is also talking about how changes are faced, about relationships, about loneliness, about opportunities, about pressure, and about the possibility of asking for help when needed."
"For people with rare diseases or who are waiting for a diagnosis, having spaces for listening and support can be an essential part of that process," adds the entity.
For this reason, FEDER insists that emotional care must be integrated into the overall care for rare diseases and demands that affected individuals and their families have access to specialized and accessible psychological support resources.