The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in its 28 member countries, officials meeting last week in Vienna said.

More than 900 people from 58 nations attended the 9th European Conference on Rare Diseases & Orphan Drugs (ECRD), held May 10-12 in the Austrian capital.  The meeting was organized by Eurordis-Rare Diseases Europe, with support from the Paris-based Orphanet consortium and DIA, a global healthcare association headquartered in Basel, Switzerland.

The EU defines a disease as rare if it affects fewer than 1 in 2,000 people. That means 6 to 8 percent of the 512 million people living within its borders have one or more of the 7,000 or so known rare diseases.