Rare diseases: years without a diagnosis take a toll

Years without a diagnosis: people with rare diseases and their families can face anxiety and uncertainty as they search for answers. In Madrid on 9 October 2026, the Spanish Federation for Rare Diseases (Feder) highlighted that strain ahead of World Mental Health Day. Getting a diagnosis does not always end it: some people must also adjust to daily changes without a specific treatment.

Rare diseases are little known, Feder says, and that can leave people feeling isolated and lonely. This year’s mental health campaign by Mental Health España puts particular focus on children, teenagers and young adults.

Feder’s psychological support service provided 3,306 support sessions in 2025. People turn to it for help with family conflict, chronic pain and the loss of independence, among other concerns. The service also supports people newly diagnosed and those still looking for answers. Feder wants specialist psychological help to be part of care for people with rare diseases and their families.

Topics: Social affairs · Health

Source: Europa Press / Mallorca.com