ISSUE 24 - MAY 2022

ERN-LUNG no longer ‘caught in the middle’ but ‘coming of age’!

ERN-LUNG has been in existence for more than five years now and we have managed to establish this network as the prime address for rare diseases of the respiratory system. We feel it is only logical, therefore, that the ER namely the editors of the ERS Respiratory Monographs, John Hurst, London, and Peter Calverley, Liverpool, have asked ERN-LUNG to guest edit the next edition of this series with the putative title of “Rare Diseases of the Respiratory System”. We are very happy and all Members and Partners of ERN-LUNG, we all as a Network can be proud of this achievement.    

After having waited for a call to get a second funding period, we have now received some kind of a promise of a gap-funding for 18 months before the next funding period of another five years is expected to start in October 2023. In accordance with the call for this gap-funding, ERN-LUNG has proposed a budget which foresees sharing some of the funds with our members. We are allowed to hire staff and thus have a chance to keep and even expand our Network Coordination Team and this is absolutely necessary. We have reported during the Annual Board Meeting that we have planned to keep the Network Coordination Team both in Frankfurt and Paris, Thomas (Coordinator) with most of the NCT in Frankfurt, while Marc (Vice-Coordinator) and Elisabeth represent the Paris section. We hope to be able to expand the Paris office in the near future and plan to switch the positions of Coordinator and Vice-Coordinator with the beginning of the new five-year funding period to allow for a smooth transition of the complex ERN organization from one place to the other.

With the funding now available for the next 18 months we are no longer “caught in the middle”. We are now able to start the transition phase. Some of our patients know what it means to change from pediatric care to adult care and we all know what coming of age means: Adulthood means taking responsibility. This is what we will have to do more and more. It is nice to have some info coming in from the Network, but it is absolutely necessary that such contributions are provided by all - you take responsibility for the network and contribute wherever you can.

We can proudly say the ERN-LUNG has come of age and now will have to perform to its expectations.

We are pleased to announce an addition to our team, Thazhone Stephy Varghese who  has joined our team in March and will support the NCT with all the upcoming tasks and challenges.

We are happy to announce that Michael Westhoff from Hauner Klinik has joined the ERN-LUNG ILD Core as Supporting Partner.

The ERN-LUNG academy was launched and is aimed to start next autumn. All nine Core Networks are asked to provide eWebinars and eCases on their core topic(s). Each CN can structure the content the way it wishes. Once the material is gathered, the academy will be set up on the ERS website and disseminated largely within the network.

On April 8^th 2022 the PRO meeting was conducted online where Prof. Simon Gibbs suggested that each Core Network adopt a PRO scale where patients could report the outcome of the treatments provided. This could assist the ERN-LUNG to monitor the patient’s health and quality of life over time and to increase patient-provider communication.

Various suggestions were provided where the design of the PRO scale and support of different languages were discussed. The Pulmonary Hypertension survey was also among one of the tasks laid out for discussion.

The next meeting has been planned in three months’ time, where the date is yet to be decided.

The European Commission has decided to have a new version of the CPMS developed by a different company partner, and the ERNs are expected to contribute and suggest improvements to be realized in the update. TOF has had a discussion with the EC team stressing gain that we need ease of access, little effort in uploading of data or slides and quick and easy invitation of guests from outside of the ERN members including people without any EC access. 

Due to the ongoing war in Ukraine, many Ukrainian people have little or no access to medical care in Ukraine or are fleeing to EU countries, especially eastern countries, to settle. Many of these refugees have or will have health limitations and therefore require medical assistance. EU governments have made a clear commitment in recent days to provide adequate health care for these refugees, including for patients who suffer from chronic illnesses and therefore urgently need sufficient medical care. In solidarity with Ukraine and Ukrainian patients suffering rare lung diseases, we have compiled a list on our website which includes resources and neighbouring countries which are willing to provide medical help for refugees who are affected by rare lung diseases. Cross-boder referrals and diagnosic advice can be provided to Ukrainians by ERN-LUNG centers located in border countries.

All 24 European Reference Networks (ERNs) launch a dedicated website and social media campaign (#ERNcare4Ua) to collect information to help health professionals find support for Ukrainian patients with rare diseases: diagnosis, treatment, advice.

The SOP for endorsement of guidelines follow similar rules as the endorsement of papers and/or meetings: in all guidelines of a European scale, whenever one or more member(s) of ERN-LUNG has/have been involved in the writing of the guidelines, the respective Core Network(s) support(s) that the guideline be endorsed, the Guideline Functional Committee will agree to endorse these guidelines and the Network Coordination Team will communicate this. As soon as any member of ERN-LUNG gets to know of plans concerning a new guideline of European scale, ERN-LUNG will try to get in contact with the leading learned society to make sure the aspects of rare diseases are being addressed and if possible one or more members of ERN-LUNG be involved.

EPAP (European Patient Ambassador Programme) is a free, online self-learning programme that introduces patients and carers to some of the basic skills and knowledge needed to represent themselves and others successfully.

There are 8 modules to choose from available in English, Dutch, French, Italian, German and Spanish. A certificate can be downloaded at the end of each successfully completed module.  

EPAP was relaunched in English earlier this year with a fresh design and improved navigation and the other language versions will be relaunched in this new format this summer. 

To access EPAP go to https://elearning.epaponline.eu/. You can also read more about the modules on the ELF website at https://europeanlung.org/en/get-involved/european-patient-ambassador-programme-epap/

The ERN-LUNG Network Coordination Team has to be represented in all meetings of the ERN-LUNG patient advocacy group. As default Elisabeth and/or Thomas will join the meetings but in cases when they will not be available some other member of the NCT will join the meetings.

You may find a list of the past and open research funding calls and training programs, some of them with revised deadlines due to the pandemic, here. We remind you that any publications, clinical trials or guidelines arising from the collaborative work of ERN-LUNG members (at least 2 HCPs from at least 2 Member States) linked to ERN activities, are encouraged to mention ERNs either in the acknowledgement section or in the authors’ affiliation. Such publications are curated here.

? CPMS Panel Discussion

?  June 1 @ 15:00 – 16:00

In our last session we had an interesting case discussion of a toddler who was born via urgent cesarean section to a mother suffering from COVID-19. The boy was positive for SARS-CoV2 right after birth but developed respiratory symptoms only after 4-6 months. Thoracic CT scans show ground glass opacities and infiltrates. Did you care for children with a SARS-CoV2 infection acquired perinatally? What was the clinical presentation initially and during follow-up?

If you are interested on details, please accept the invitation to join the panel on this case in the CPMS and have a look at the case description and the CT& scans. These can be accessed in the CPMS by clicking on “show” and then select the series button on the left lower corner of the window which opens.

? 45th European Cystic Fibrosis Conference 

 ? June 8 @ 8:00 – June 11 @ 17:00

The ECFS looks forward to welcoming you to the 45th European Cystic Fibrosis Conference in Rotterdam, the Netherlands 8-11 June 2022

? 2nd ERICA General Assembly

?  June 20 @ 8:00 - June 22 @ 17:00

? ERS/ERN-LUNG virtual school on rare lung diseases

? June 21 @ 8:30 – 18:00 (online)

This European Respiratory Society (ERS) / European Reference Network (ERN-LUNG) collaborative course will present the latest understanding and advice on the management of rare lung diseases. Due to the small number of people affected with rare lung diseases, diagnosis can be difficult and treatment options are limited. This online course will provide an overview on how to diagnose and treat rare lung diseases, including interstitial lung diseases, pulmonary hypertension, cystic fibrosis, primary ciliary dyskinesia, non-cystic fibrosis bronchiectasis, rare obstructive lung diseases and rare thoracic cancers. 

? ECM Congress 2022

?  June 23 @ 8:00 - June 25 @ 17:00

? 11th European Conference on Rare Diseases & Orphan Products (ONLINE)

 ? June 27 @ 8:00 - July 1 @ 17:00

? Chest Congress 2022

 ? June 27 @ 8:00 - June 29 @ 17:00

? 5th World Bronchiectasis & NTM Conference

 ? June 30 @ 8:00 - July 2 @ 17:00

? World Bronchiectasis Day

 ? July 1 @ 8:00 - 17:00

? ELF-EMBARC PATIENT CONFERENCE

? March 27 @ 10:00 - 16:00

? ERS LUNG SCIENCE CONFERENCE 2022

? March 10-13 @ 8:00 – 17:00CET

? ERN-LUNG ANNUAL BOARD MEETING (ABM)

? February 23 @ 9:00 - 17:00

? ERS SATELLITES 2022

? February 24 @ 9:00 - 19:00

➔ Let us know if you are participating in any conference where you will be presenting ERN activities and results

➔ Let us know if you have published anything recently (2022) so that it can be highlighted on the ERN-LUNG website

Take a look at the latest EU Funding Calls here: