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The European Organisation for Rare Diseases (Eurordis) is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. The mission of Eurordis is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level and to fight against the impact of rare diseases on their lives.
TIF became a full member of Eurordis in February 2007 and has since then been an increasingly active participant to the organisation’s work, contributing a valuable perspective from patients with thalassaemia and other haemoglobinopathies – which within the European Union fall under the definition of “rare” disorders.
In 2007 TIF organised the First Pan-European Workshop on Thalassaemia and Other Haemoglobinopathies, held concurrently with the Eurordis 4th International Conference in Lisbon on 27–28 November 2007. Read report.
Important dates:
2009 Membership Meeting – 8–9 May, Athens
2009 Summer School – 14–18 June, Barcelona
What is a rare disease?
A rare disease is a life-threatening or chronically debilitating condition affecting not
more than 5 in 10,000 (or 1 in 2,000) persons in the European Community.
Source: Reg EC 141/2000 of the European Parliament and of the Council of 16 December 1999
on orphan medicinal products.