The yearly ERS congress was organised in Vienna from 7 to 11 September. Preparation was started well ahead as we planned many activities to take advantage of the opportunity to meet close to 20,000 delegates from the respiratory field.
First time ever we had a booth which attracted many visitors and we could raise awareness of our network. We made a good use of our various flyers; materials were disseminated which introduce the rare disease areas (we called them core networks) we cover, including the minimum criteria to join our network. We elaborated a flyer to promote our BREATHeREGISTRY, the registry which can be directly inputed by respiratory patients and carers, and moreover they can indicate whether they are interested to be contacted once a new clinical trial commence. We also introduced our team with a big poster.
In collaboration with the European Lung Foundation we kicked off the Monday with a transplantation forum with the involvement of patient representatives and healthcare professionals from ERN-Lung. Many interesting topics were covered, including information needs of patients, rehabilitation, future outlook and many more.
There were core network specific meetings and also many one on one discussions how the common projects can be implemented and make, ultimately, ERN-Lung a strong and active network.
The ePAGs, patient representatives to ERN-Lung, continue to play an important role in ERN-Lung’s life. They actively participated in scientific sessions, symposia, meetings of clinical research and pharmaceutical sponsored events. While their contribution as speaker and pannelist is very well received, sadly, the access of patients and patient representatives as visitors and attendees to such sessions and the facilities the congress provides is limited. Action and cooperation is needed from all stakeholders to bring change on this particular important issue. Everyone needs to recognize that these patients and patient representatives are participating as patient experts and their key role is to bridge and facilitate the two way communications between the patient community and other stakeholders including healthcare professionals and pharmaceutical industry.
The ERN-LUNG Network event, part of the official ERS programme on Wednesday, was very well attended – next year we need to make arrangements to book a bigger facility. The session was nicely balanced and packed with a lot of information on the Undiagnosed patients Working group, How to build up a Clinical Trial Network, the ERN-LUNG Goes East initiative, as well as a testimony from an Alpha 1 – Antitrypsin patient representative. Many questions were raised and following the session the discussion continued.
