ISSUE 25 - JULY 2022

Grant Agreement Preparation – GAP. We have finally started to discuss with Theodore the Grant Agreement for the gap-funding period from April 2022 until September 2023. The good news first: The amount of the grant has not really been challenged, and our concept of having resources to share with Members of ERN-LUNG, i.e. to be able to pay your contributions (academy content etc.) will be part of the contract. Member HCPs can send invoices and will then be paid by ERN-LUNG. This is really great or just self-understood, depends on where you come from. We have been used to having empty hands and pockets and still had to ask you for eCases, eModules to be used in our eLearning project, for data to be filed for reporting the number of new patients, for sharing your most interesting reading  with us, etc. This where we come from and why we are very happy to have this option in the near future. We will be able to – at least with a small amount – pay for your contributions.

The bad news? It is just not so good news for the coordinator and the Network Coordination Team. We will have to re-write some passages and split tasks into subtasks and consequently we will have many more deliverables to prepare and reporting will be more demanding i.e. detailed again. We will be allowed to hire more staff (if we manage to find good staff on such a short contracting period) but it will be lots of reporting in a short period of time.

That reminds me of our first ERN-application and the daily work during our first years of ERN-LUNG. I thought we had learned to reduce the granularity of the workplan, the tasks and the deliverables, we were happy to boil the paper works down to the essentials, the less the better. But now having a much bigger budget, it is expected and “only adequate” to go more into detail to better visualize what we are going to do for so much money. We understand this and we have shown before that we are able to learn. Now we are going to detail again.

Since the ‘good news’ is for us all (we will all get more of what we need to keep ERN-LUNG running and growing and succeeding), and the ‘bad news’ is for just a few of us (just more work for some, i.e. the NCT), we think things are just OK. The Coordinator and the NCT will do the job we have asked for: Trying to support you to improve the situation of patients with rare diseases of the respiratory system, and, therefore, we should stop discussing about the right degree of granularity in reporting and evaluating, let’s just get things done.

A second meeting by the LES Working group was held on 22.06.22 to discuss the involvement of industries in ERN and to bring about changes in the amendment to enable ERN-industry interaction. Report from Vasern on COI and MS (France and Italy) were also presented. The next meeting is planned for August. Date yet to be decided.

A stronger European response to rare diseases – the case of pulmonary hypertension

Initiated by Gergely Meszaros (PHA Europe), hosted by Istvan Ujhelyi (MEP from Hungary) and chaired by Marc Humbert (president of the ERS), the event focused on EU policies regarding rare diseases and more particularly PH. The MEP Lung Health group is a multi-national group of members of the European parliament who was formed in October 2020 and decided it was necessary to raise awareness on respiratory diseases across Europe. Apart from the audience present in Brussels, around 900 people watched the meeting on Facebook Live. Find out more information on this event HERE

Organized by Michael Kreuter (Heidelberg), Marlies Wijsenbeek-Lourens (Rotterdam), Vincent Cottin (Lyon), Cristina Ardura-Garcia (Bern) and Marc Humbert (Paris), this very successful event provided conferences and case discussions during a full day (June 21).

Experts from numerous countries and health systems, as well as patient representatives exposed the challenge of diagnosing and treating rare respiratory diseases. Participants were able to ask questions or present case histories themself. This type of virtual schools will be repeated in the future, on a regular basis, in a frequency which has still to be determined.

We had three productive days full of interactive sessions and we are thankful for everyone’s active contributions both in Bologna and remotely.

All the presentations are now available at the ERICA Website. PRESENTATIONS Video recordings and photos are available on the ERICA website

ERICA 2nd GA 20-22 June 2022 Bologna (hybrid).Keep updated with ERICA activities via ERICA Newsletter

EURORDIS wants patient organisations to participate in European Reference Network (ERN) decision-making processes and is supporting its membership

EURORDIS has developed a European Patient Advocacy Group (ePAG) for each ERN disease grouping, including lung diseases. The ePAGs will bring together elected patient advocates and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process.

Are you interested in designating a patient representative to get involved in the European Reference Networks (ERNs) as an ePAG advocate? This might be your chance to make the voice of your patient community heard at the European level. Don’t miss it!

At the moment, we specially encourage applications from:

• Patient organisations from Eastern and Northern European countries;
• Patient organisations covering the disease areas included in this list.

For more information on ERNs and the role of ePAG advocates you may watch this video and read this short guide.

If you want information on the specific requirements for Patients Organisations to apply, the required skills and experience for candidates and the application process, please contact lenja.wiehe@eurordis.org

Recruitment period: 25th of May to 31st of July 2022

Please help us put a face to the rare lung disease PCD. During the past two years of the pandemic, high-risk patients and their families have been faced with the problem of coping with their their already difficult daily lives.
Two people affected by the Kartagener Syndrome and Primary Ciliary Dyskinesia Association accompanied the members through this difficult time in a three-part magazine and together they managed this wonderful project. At the beginning of May, the magazine went to press collected in one issue and was distributed to members, outpatient clinics and rehab facilities alike. Now the issues are also available online as interactive PDFs on the association’s website.
Since the contents are also interesting for other patients (especially those with other respiratory problems), we now want to share it and make it known.

The three issues of the Cilia Focus Special on the Corona Pandemic are now publicly available. They are interactive PDFs, meaning there are clickable links, more or less visible, hidden throughout the issue. You will be redirected (if you are connected to the internet), you can read further information or jump to any article via the table of contents. Feel free to click through, have fun discovering!

Here you can download the Zilienfocus special on pandemic response:

Zilienfocus Spezial Teil 1 (Juni 2020)

Zilienfocus Spezial Teil 2 (Februar 2021)

Zilienfocus Spezial Teil 3 (Mai 2022)

Please click here for more information

The PCD Core Network met on May 19th.

The issues discussed were about internal organization, funding, research and education.

A physical meeting in Barcelona in September 2022 as a pre-meeting to the ERS annual meeting will help to dive further into these matters.

Furthermore, we have created a PCD sub-page within the ERN-LUNG website, which is just about to be released in a couple of days! 

A workshop on the assessing the state of play regarding the structured collection of long-term follow up data for patients identified by Newborn Screening (NBS) in European registries was held on the 19th of July led by Stefan Kölker, James Bonham and Ulrike Mütze. This was the first of the two proposed workshops. Workshop 1 focused on the presentation of the results of the survey on the existing European NBS registries (survey addressed the composition of national screening panel and registry). 51 countries were invited to participate in the survey, of which 31 responses were received. The results showed that of the reported registries by disease groups, more number of registries collecting data were available on inherited disorders of metabolism followed by endocrine disorders and cystic fibrosis. 68% were national registries and 13% European. With regard to long term outcomes most of the registries consisted of clinical outcome data and mortality whereas only half of the registries consisted of cognitive function(IQ). Treatment and other data like laboratory and health economic data were also included in the survey. Further discussions on the validity of the received data were analyzed and the future improvement of the registries in the long run were explored.

Workshop 2 is planned for the 8th of November 2022 (14:30 – 16:30 CEST) on developing the data model for a NBS module in the U-IMD registry capable of collecting meaningful data across a wide spectrum of diseases and country specific programs with a realistic understanding of data availability.

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.

?  Call for recruitment of new ePAG advocates

?  Deadline: July 31

? CPMS Panel Discussion

?  August 24 @ 15:00 – 16:00

Case to be announced

?ELF Patient Organization Networking Day 2022

?  August 31, 10:30 - 16:00 CET

? BEAT-PCD & ERN-LUNG Joint Meeting

?  September 3 @ 09:00 - 12:00

? International Summer School on Rare  Disease Registries and FAIRification of Data

?  September 26 @ 13:30 (online)

?  Innovation Bootcamp in Rare Diseases

 ? October 12, 2022

? 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. 

? 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

➔ 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: