Centres of Expertise (CEs) are expert centres for the management and care of rare disease (RD) patients. CEs are designated at a national level by each EU Member State.

ILD/IPF centres of expertise specialise in ILDs (interstitial lung disease). They aim to provide IPF patients (among others) with the highest standards of care and to deliver:

  • timely diagnosis;
  • appropriate treatments; and
  • follow up. Β²β΄

The European Union Committee of Experts on Rare Diseases (EUCERD) recommends that centres of expertise offer a wide range of specialised services. These should include:

  • consultations;
  • medical examinations;
  • specialised equipment;
  • genetic testing and counselling; and
  • social care.

CEs also contribute to research and collaborate with different stakeholders, including rare diseases’ patient organisations.²⁡

The European Commission has organised European Reference Networks (ERNs), aimed at tackling complex or rare diseases and conditions that require highly specialised treatment and resources. CEs are involved in European Reference Networks and organise travel of expertise or cross-border care when appropriate. More information about ERNs is available here

A European Reference Network on respiratory diseases (ERN-LUNG) was launched in March 2017 and IPF is part of this programme. More information about ERN-LUNG is available here

The list of expert centres in Europe can be found here.

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Recognising IPF and facing its reality .jpg