Sunday 4 March 2018

What the EU does for people with rare diseases

The EU has the might to rise above the economic liberal assumption that if a drug company cannot make serious profit on drugs to treat rare diseases, then the disease is not worth treating.

The EU provides funding for patients’ organisations that connect patients, families, policy-makers and healthcare professionals. European laws have created incentives for researchers and companies to develop treatments, or what are known as ‘orphan drugs’ for rare diseases. To exchange information and provide support on complex or rare diseases that require highly specialised treatment and a concentration of knowledge and resources, the 2011 EU Directive on Patients’ Rights in Cross-border Healthcare established European Reference Networks of healthcare providers across Europe.

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