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Addendum to the 2013 recommendations on European Reference Networks for rare diseases

Tuesday 7 July 2015

GIFThe Commission Expert Group on Rare Diseases adopted an addendum to the 2013 recommendations on European Reference Networks for rare diseases. This addendum aims to address two areas with particular specificities for rare diseases:

  • the necessity of patient involvement in Rare Disease European Reference Networks
  • an illustrative grouping of Rare Disease as a possible approach to Rare Disease European Reference Networks planning and to eventually ensure coverage of all Rare Diseases. The Rare Skin Disorders are one of the thematic networks identified by the Commission Expert Group on Rare Diseases. Each Thematic RD ERN should ensure continuity of care for patients by bridging the transition from paediatric through to adult care ; therefore, it is highly recommended that a single ERN is established in each domain to meet the needs of both paediatric and adult patients, wherever possible.

Source :
- Addendum to the 2013 recommendations on European Reference Networks for rare diseases
- Flash report of the Commission Expert Group on Rare Diseases meeting of 10-11 June 2015

Read the addendum to the 2013 recommendations on European Reference Networks for rare diseases

Fondation René Touraine