Sustaining rare diseases as an EU public health priority

Rare diseases have gained recognition as a public health priority and as an area of unique European added-value for Community action. Since 1999, the European Union has taken measures to fight against rare diseases and their impact on patients’ lives, and has made rare diseases a priority of its public health programmes.

The adoption of a Council Recommendation on a European Action in the field of Rare Diseases in 2009 demonstrated the vital importance of EU action and cooperation between Member States. The two levels, European and national, are key factors of success in this area and correspond to a real need in the patient population.

Position papers

Rare diseases: understanding this public health priority

Centres of Expertise & European Reference Networks for Rare Diseases

European Reference Networks of Centres of Expertise

The European Network of Rare Disease Help Lines

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RareConnect

A social network of Rare Disease Communities led by NORD and EURORDIS in partnership with leading disease-specific patient groups. List of Rare Disease Communities:

Rare disease blogs

A disappointing consultation on the UK plan for rare diseases Wed, 07 Mar 2012 - I’ve just been reading through the consultation document for the UK plan on rare...
Why Rare Disease Day is So Important Mon, 27 Feb 2012 - When EURORDIS first created Rare Disease Day in 2008, my first reaction was a bit...
Rare Disease Day: Building momentum towards international collaboration. Mon, 27 Feb 2012 - As we celebrate the International Rare Disease Day 2012 we are turning rare diseases into...
NORD Supports TREAT Act Introduced by Senator Hagan Thu, 16 Feb 2012 - U.S. Senator Kay Hagan (NC) has introduced proposed legislation that NORD believes could...