The EU’s rare disease lottery: why your treatment depends on whether you live in Ireland, Germany or Malta

There are around 36 million people with rare diseases living in the EU — that’s one-in-every-12 people.

‘Orphan drugs’ is the name given to treatments specifically designed for rare diseases, which often have exorbitantly expensive price tags.

When a drug is approved by the European Medicines Agency (EMA) in Amsterdam, it then falls to individual national governments to perform higher technological assessments (HTA) and cover the cost of the drug,

This leads to unfair, unequal access in Europe.

In countries where HTAs are performed quickly and efficiently, patients can access drugs affordably within months of EMA approval.