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New Newsletter from ERN-LUNG |
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We have set up a new newsletter system for the website https://ern-lung.eu which facilitates the sending and archiving of our ERN-LUNG newsletters. According to European data protection laws, your consent is required for the future sending of the newsletter. Please confirm this email if you like to continue receiving the Newsletter. |
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WORD FROM THE COORDINATOR |
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Good News first!
ERN-LUNG welcomes 28 new members as of January 1st, 2022!
We still expect ERN-LUNG to be able to continue its work after the end of the initial five years funding period (February 28th, 2022).
No bad news? Not so far. We still don’t have any binding financial agreement for the next year, but we keep our optimism and hope to be able to continue our work together with all of our members, Affiliated Partners, Supporting Partners, Patient Organizations, and friends. The Network Coordination Team (NCT) will do all it can to improve our services and make ERN-LUNG a strong supporter of rare diseases of the respiratory system throughout Europe. For this we need your input and your requests! Lease, do not hesitate to get in contact with your questions and proposals for improvements – we will be happy to work together with you all to achieve our goals:
- Ensuring and promoting excellence in care and research for the benefit of patients affected by rare respiratory diseases
- Being the European knowledge hub for rare respiratory diseases
- Taking stock of existing expertise at European level in the area of rare respiratory diseases assess gaps and identify solutions.
- Improving cross-border collaborations for improved continuity of care and providing highly specialized patient-centered care in rare respiratory diseases.
- Advancing innovations in medical science by reinforcing research, epidemiological surveillance by registries, clinical trials, and providing training for healthcare professionals.
- Ensuring easy access to quality and accurate information on rare respiratory diseases by developing online and offline resources about diseases covered within ERN-LUNG.
- Strengthening the skills, competencies and abilities of key ERN-LUNG target groups via annual training programs and continued educational activities targeted at HCPs and patients.
We are looking forward to meeting you all in our forthcoming Annual Board Meeting (ABM)...
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UPDATE ON STAFF DEVELOPMENT WITHIN ERN-LUNG |
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While the unexpected resignments from our former team members Sabine, Keerthana and Michelle have left the Network Coordination Team a little stuck and overwhelmed with a sudden increase in workload last year, and we have been left with the challenging task to prepare our stategy for backfilling the positions and distributing their workload to the remaining team members until a replacement was identified, we are happy to announce that Elisabeth Humbert-Dorfmüller has joined ERN-LUNG in December. Elisabeth is based in Paris, France and we are happy that she is helping us juggle and perform all operational activities within the team. |
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ERN-LUNG ACADEMY - UPDATE |
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The Postgraduate Training Program will start this year. It will combine eLearning modules, eCases and short-time cross-border training visits to those who wish to acquire expertise in rare diseases of the respiratory system. The program will be available on the eLearning platform oft he ERS. Access will be free of charge and to anyone with an ERS account (no membership required). We will keep you informed as soon as the content is available and explain how to register ! |
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- EURORDIS all ePAG Meeting: Report available here
- EURORDIS Photo Award: Submission Deadline January 16, 2022
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- ERN-LUNG Population Registry: We have set up a brand new video containing facts about the registration process and how to enroll in the Population Registry, which was set up by TOF Wagner and Elisabeth Humbert-Dorfmüller! Take a look at the webinar:
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The PopReg is currently available in German and English, but we have decided that it would be good to offer it in all EU languages, so that patients can operate the platform in their native language. We will start with the translation in Italian and French, and then move forward to the other EU languages. This will of course take some time, which is why we need support from the patient groups to help us with the translations.
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To know more about the main developments of the ERN community as a whole, you may access the reports on the past meetings of various ERN Working Groups last year:
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- AMEQUIS Conference (final), January 18
- CPMS Panel Dicussion, January 19, 15:00 CET
- Welcome meeting for new ERN-LUNG members 2022, February 2, 15:00 - 17:00 CET
- Annual Board Meeting (ABM) - pre-meetings (CN and FC specific), February 16, 15:00 - 18:00 CET
- Annual Board Meeting (ABM), February 23, 9:00 - 17:00 CET (online)
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- Please let us know if you are participating in any conference where you will be presenting ERN activities and/or results
- Please let us know if you have published anything recently (2021) so that it can be highlighted on the ERN-LUNG website (this will also help facilitate the biannual ERN Monitoring Data Collection process)
- Please send us your monitoring data for the second half of 2021 (July-December), corresponding to the indicators defined by the ERN Coordinators Group (only for full members and Affiliated Partners)
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A new paper from the CF Core called „Effects of a Partially Supervised Conditioning Program in Cystic Fibrosis: An International Multicenter Randomized Controlled Trial (Activate CF, Helge Hebestreit et al.)“ has been published in the Am J Respir Crit Care Med (https://pubmed.ncbi.nlm.nih.gov/34735776/).
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Take a look at the latest EU Funding Calls here: |
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ERN-LUNG Coordinating Center: University Hospital Frankfurt
Theodor-Stern-Kai 7 60596 Frankfurt am Main, Germany
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