Care for patients is our collective ethical duty. ERNs are one of the most ambitious and complex collaborations between expert healthcare providers and clinicians legally based on an EU directive (The Cross-Border Healthcare Directive published in 2011). This give patients the right to seek diagnosis and treatment across borders under certain provisions, if it is not available in their own country.
24 brave clinicians have risen to this challenge and have realised the most outstanding network, unique in the world, involving about 20,000 healthcare professionals in 300 hospitals in 26 countries, and taking care of approximately one million rare disease patients.
Approximately 150,000 patients are under the care of the 35 UK hospitals and 129 healthcare professionals inside 23 ERNs. This accounts for about 20-25% of all patients under ERNs. We must think about these patients. All patients with a rare or highly complex condition, requiring a multidisciplinary team, highly technological research and the support of therapies developed by industries translating brilliant ideas into innovative therapies.