Eurordis - Rare Disease Europe

Following an initiative by Commissioner Kallas on Transparency, Eurordis contributed to the debate on transparency and legitimacy of non-governmental organisations (NGOs). Our position calls for a better distinction between lobbying activities by stakeholders with a financial interest and advocacy activities by groups of individuals or associations voicing citizens’ needs and views on critical issues such as health or human rights.

We believe that transparency cannot – and should not – be restricted to the narrow issue of transparent funding, but must also include criteria such as the legitimacy of an NGO’s membership base.

We suggest that NGOs contribute to the debate by putting forward a set of good practices. We also describe in detail how we put our principles on transparency into practice.