Half a million people in Europe are diagnosed with a rare disease every year, and rare or low-prevalence complex diseases affect the daily lives of around 30 million European Union (EU) citizens. Health systems in the EU aim to provide high-quality, cost-effective care, but this is particularly challenging for rare or low-prevalence complex diseases and conditions. Clinicians face challenges in diagnosing and treating patients due to limited knowledge, information, and exposure to uncommon symptoms and disease mechanisms, meaning many patients have faced a diagnostic odyssey when searching for answers. Highly specialised care and surgery for rare conditions should occur in centres of excellence with highly trained and experienced surgeons using multi-disciplinary teams (MDTs). This centralised approach is cost-effective and provides the best possible outcomes, improving survival and quality of life.
Rare Diseases and Complex Conditions
