Carrots, conversations and scolding: the rare disease community's battle to make its patients a priority

6 June 2016

The progress that has been made globally in developing treatments for rare diseases in the last 20 years is enormous.

At the end of the 20th century – even with the Orphan Drug Act having been passed in the USA in 1983 – there were just eight medicines approved in Europe for diseases which, albeit affecting small population percentages, can cause dramatically reduced quality and length of life for those affected.

It was at that time – in 1997 – that the European Organization for Rare Diseases (EURORDIS) was formed, representing patient groups and individuals from across the continent and giving them a voice to make sure their care and treatment needs are heard.

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