ISSUE 29 - JUNE 2023

Welcome to the latest edition of the ERN-LUNG newsletter.

You can find information on past, ongoing and future activities within the ERN-LUNG coordination team, as well as collaborative work, general ERN topics and rare disease news. Last but not least, we have a summary of interesting events coming up in near future. We hope you enjoy this newsletter issue and in case you have any questions, please do not hesitate to contact the ERN-LUNG Network Coordination Team.

Kind regards

Your ERN-LUNG Network Coordination Team

Dear all,

The Board Meeting is over, it has been a good experience, you have received the minutes and we are working on getting the things done we have decided to do during the meeting.

So far so good. By the way, the new application is almost ready, the dead-line postponed, a few more things to consider, a few more requirements to meet, which have been put on the table by the European Commission. Well, we are flexibly responding and trying to do our best.

Now, that you receive the reimbursements we are sending to you, to cover your travelling expenses you will realize that we are sending less than you may have expected. This is not due to the fact that we have a new financial officer. Dorothea is doing her best trying to find the highest possible reimbursement. It is rather due to a new regulation called UNIT COST REGULATION.

A certain trip from a European City to another European City with a defined length of stay is one UNIT. One UNIT has a fixed price tag, you will not get more than this. There is merely no flexibility. If the distance is above a threshold, you may travel by plane, if you do, you will get a different price tag, but it will ever hardly cover the real cost. The European Commission has made the UNIT COST REGULATION a part of our contract. We cannot go back to the old more individual travel cost regulation.

So, please, don’t get too angry, not for ERN-LUNG. We try to explain a little inside this newsletter what the idea, the possible advantages are and what we are about to do about it.

Best wishes for a nice summer

The ERN-LUNG ePAG (European Patient Advocacy Group) met on May 10th. Topics discussed included the evaluation from the European Commission (which the ePAG had to undergo like all the other stakeholders), the participation of patient representatives in EURORDIS Working groups, and the current state of cross border care. Patient representatives also declared very satisfied with the creation of a Sarcoidosis Core Network. Cross ERN cooperation was another topic: why should we not benefit from each other, especially for diseases which are on the frontier of two or more ERNs? 

EURORDIS had held a second webinar on exchange of good patient partnership practices on the topic -Involvement of patient organisations, patients and family members in RD National networks and ERN National Coordination Hubs. The webinar introduced the Filieres French Network and about 45 participants attended the webinar. Question and answer sessions involved patient-doctor relationship, support, and other experiences. The recording is available HERE.

EURORDIS-Rare Diseases Europe has announced the call for volunteers to join our Digital and Data Advisory Group (DAG). The group provides advice to EURORDIS on all aspects of digital health policies and procedures, with the mission of recognising and acting upon opportunities for people living with rare diseases.

As the ERNs are coming to the end of the first 5-year cycle, the European Commission has organised the evaluation of all networks and patient involvement in the ERNs is a central component of the process. EURORDIS has organized an exchange of good practices webinar to showcase how the patient representatives have been involved in this process, namely by:

-Setting the context of the methodology being used and,
-Providing real world experiences from ERN patient representatives and Managers about how the patients have been involved in the process so far. Watch the webinar HERE

The Joint Research Center (EC) organised the European Rare Disease Registry Infrastructure - ERDRI training that will focus on the use of the ERDRI tools for building patient cohorts. Around 90 participants attended the presentation. More about patient consent and building patient cohorts in ERDRI; MetaData Repository of new registry framework, semantic interoperability and the SPIDER pseudonymisation tool were discussed. Probably the next webinar would be on the legal and ethical issues related to the use of SPIDER.

Tens HCPs in ERN-LUNG have currently undergone onsite audits, with the rest HCPs scheduled till 18th May. On 18th April DG SANTE and HADEA had an interim meeting with the Independent Evaluation Body (IEB) representatives to learn about the state of play of the ongoing ERNs evaluation and to discuss the next steps. The IEB representatives shared that the vast majority of HCPs presented high level of commitment and see the ongoing evaluation as an opportunity for improvement.

On March 22 and 23, 2023, the ERN-LUNG Annual Board Meeting was held. Representatives from ERN-lung members, Affiliated Partners, Supporting Partner/Members, and Patients made up more than 98 attendees. The Core Networks and Functional Committees discussed their upcoming plans as well as the tasks they completed in the previous years. Thomas Wagner thoroughly covered important subjects including the new funding period 2023–2027, the five-year evaluation period, registry, and communication and dissemination, and he presented the audiences with the future objectives. The meeting report is available here

After having extended the deadline for submission of the ERN Monitoring data of ERN´s the healthcare providers, the data submission exercise has been closed on May 12 and the EC will start processing the submitted data.

The ODR4RD kick-off meeting was held by Orphanet on the 14th of April 2023 to discuss OR4RD project achievements, planned OD4RD2 activities and brainstorming session together on the way forward for a better identification of Rare Diseases in the National Health System. The gathering had prioritized presenting subjects such as ORPHAcodes implementation in hospitals: German use case presented (Holm Graessner ERN-RND), Collaboration feedback from ERNs perspective (Irene Mathijssen ERN CRANIO), Orphanet database results analysis: Disease coverage by ERN centres – (Orphanet Director, Ana Rath), Interactions with the ERNs Integration Joint Action (JARDIN Coordinator, Till Voigtlander), ORPHAcodes Implementation at National Level, Hospitals Managers perspective: the Netherlands use case (Ilse Nederveen MSc -EUHA & Erasmus MC Representative; Robert Molthof-Dutch Hospital Data) and National Hubs activity feedback from an Hospital Clinicians perspective (Norway, speaker TBC) which had taken precedence.

Within horizon europe, the European Commission, Member States and associated countries have launched the rare diseases partnership to support research tailored to patients' needs, use health and research data and coordinate international coordination, to accelerate the development of treatments and diagnostic pathways. Please click HERE to complete the survey before June 9.

This survey aims to collect information on the status quo on ERNs and Clinical Research. It is developed by ERICA WP4 Clinical Trial Support on the basis of the previous survey delivered in 2018. The results of the two surveys will be compared to provide a more comprehensive state-of-the-art of ERNs and clinical research. The survey is addressed both to ERN Coordinators as well as their ERN HCP members. Please complete the survey HERE.

A Global Nursing Network on Rare Diseases has been established in Singapore this March to exchange skills, knowledge, solve problems and generate new ideas for the rare disease community.  There are no prerequisites to join this Network, except being a nurse and having an interest. May we ask you to spread the word (through e-mails, newsletters, meetings, otherwise) and to encourage participation of our nurses in this Global Nursing Network? Let's empower our nurses! Find out more.

➔ 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 (2023) so that it can be highlighted on the ERN-LUNG website

• HaDEA Calls for Proposals on Health
• HaDEA Calls for Tenders on Health
• Horizon Europe calls for Funding on Health