ERN-LUNG – help and support for people with rare lung conditions

Patient journeys

ELF is part of the European Reference Network (ERN) for the lung (ERN-LUNG). ELF has been working together with EURORDIS (European Organisation for Rare Diseases) and other patient organisations that form the ERN-LUNG Patient Advisory Group (ePAG) to develop patient journeys. Patient journeys are testimonials developed by patients to map out their clinical presentation and unmet needs through the various phases of diagnosis, treatment and care. They are used as a way to communicate with healthcare professionals and others to show their experience and to highlight areas where there could be change or improvement.

ERN-LUNG ePAG has just completed four patient journeys in:

  • Sarcoidosis
  • Primary ciliary dyskinesia
  • Idiopathic pulmonary fibrosis
  • Pulmonary hypertension

Getting help from the ERN-LUNG

“Can you please help me?”

This is a question that the ERN-LUNG loves to hear. The aim of the network is to help you find the answers to your questions about your rare lung condition.

A 54-year-old woman with a history of thrombosis and pulmonary embolization recently asked the ERN-LUNG for help. She wrote to to find an expert centre for pulmonary thrombendarteriectomy – a procedure for a rare lung condition that requires an expert team and is not performed in all hospitals.

The patient was originally from Spain, but living in Italy. ERN-LUNG, together with its experts in pulmonary hypertension, referred the patient to a well-known ERN-LUNG expert in Italy. The email with the recommendation and contact information was sent on the same day the request came in.

However, since the patient had most of her family living in Spain, she requested for an ERN-LUNG expert in Spain as she preferred to undergo the surgery closer to home and her family. ERN-LUNG then provided two additional contacts of ERN-LUNG expert centres in Spain, to give the patient a choice of location that would be closer to the place where her family was living.

Six weeks later, the patient had been in contact with the Italian ERN-LUNG Centre of Expertise, and she had forwarded her medical data to this specialist, to be sure some expert close-by would be able to help in case of an emergency before and after her surgery. Additionally, she got in contact with both clinics in Spain and decided which one she wanted to get her treatment at. She felt very confident that she would get help there and confirmed that she would make an appointment with these experts to have her surgery done as soon as the COVID-19 pandemic situation will allow.

ERN-LUNG has a key role to play in guiding patients to where they should be going – to the right centre in the right location where the patient’s native language is spoken. ERN-LUNG is uniquely positioned to guide patients to the relevant centres of expertise that are of excellent quality and yet close enough to home. Through ERN-LUNG, experts can also discuss cases with each other to share experiences and refer patients to other centres of expertise where they can find exactly the right treatment.