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Happy Holidays and all the best to you in the year to come! It's a pleasure to work with you and a joy to wish you a merry Christmas! The holidays are a perfect time to remind you how much we appreciate your collaboration with ERN-LUNG. Best wishes for the Holidays, and for health and happiness throughout the coming year. |
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WORD FROM THE COORDINATOR |
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Dear all!
We do have a signed contract for the GAP Funding period!
That is really good news, since we have already spent some of that budget. Quite a significant amount of the budget, though, is for YOU!
If you lead a CPMS panel, if you prepare content for the ERN-LUNG Academy – we will be able to pay you for that. And, please, help us spend that money – we need your contributions for our cross-border case discussions (CPMS) and we still need more web content for this phantastic group of people who want to learn more about Rare Diseases of the Respiratory System in our ERN-LUNG Academy. And there is funding for paying for your reporting (registry data collection) and for setting up Clinical Trials Networks. We have less than one year now to get this going and get you paid for it!
Some of you have already participated in the webinar about the evaluation of all ERNs after five years. There will be quite some work to be done before the deadline by the Network Coordination Team for ERN-LUNG as a whole and for all of our HCPs being members of ERN-LUNG since the first day! The NCT will do whatever we can to support you. We will have a new member of the team with this special focus: Support you with the evaluation.
These are busy days; we have just finished reporting our CEF funded projects and on December 14th we will learn what the call for the next four years of funding for ERNs will look like. But, with your help and enthusiasm we will manage to tackle all of this and hopefully see you all in Frankfurt during the Annual Board Meeting.
Have a wonderful Holiday season
Best wishes
Thomas |
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ePAG MEETING 2022 |
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This year’s ePAG meeting was organized by EURORDIS and ePAGs on 14th to 17th November. More than 77 participants had taken part in this meeting either to present or to voice their ideas. The topics on these days included about ERN and ePAGs, listening and how best to capture to community’s voice, communication of ERNs added value and lastly chat with the experts. Topics on clinician-patient partnership were one among the many topics. ERN Coordinators, ERN Project managers and ePAGs presented their topics and ideas. |
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DISCUSSION OF THE NEXT CALL |
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The meeting for the next call for applications by all ERNs for the financing of the coming four years after the gap period (years 2023-2027) took place on December 15, 2022.
Donata Meroni and Artur Furtado (European Commission) presented financial and technical issues and gave an introduction to new objectives. There will be various indicators to be used to evaluate the ERNs over the next years and the ERNs will be expected to describe their resp. actual status and the projection for the year 2027. A list of these (old plus some new) indicators will be available from December 19th and we will have to respond with our baseline data and our prognosis by Jan. 15th. |
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ERN-LUNG ACADEMY |
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Update: The first "class" of participants has been recruited. 43 participants from 13 EU countries, plus two participants from Ukraine, will receive access to webinars on the respiratory diseases covered by ERN-LUNG. Subsequently, they will do a practical experience in one of our expert HCPs, chosen by them. We look forward to welcoming this community of future experts! |
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Exchange of ePAG Good Practice webinar - Patient Clinician Teambuilding Pilots |
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A virtual meeting for ePAG exchange of good practices on Patient-Clinician team building was conducted on 13th December. It focused on the five objectives which were used to guide the pilot sessions. Two ePAG advocates and three ERN Coordinators from ITHACA, RECONNET and LUNG presented on their experiences with pilot study on implementing team building between patient representatives and clinicians. After the presntations, questions and discussions were held on the different challenges on preparing, improving and strengthening patient-clinician interactive sessions. |
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2nd STRATEGIC ASSEMBLY OF COORDINATORS & PMs |
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The 2ND Strategy Assembly of Coordinators and Project Managers of the 24 European Reference Networks of Rare Diseases was held on 22nd November in Lyon, France. Topics on European Health Data Space, Ukraine crisis, Financial strategy and legal entity of the ERNs were put forward. All representatives of the 24 ERNs were encouraged to present their developments and innovations in the past, present and future years. Advances on registry were presented. |
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ERICA PROM´s REPOSITORY |
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The ERICA Patient Reported Outcome Measures (PROMs) Repository is the first attempt to identify and centralize Clinical Assessment Outcomes questionnaires of relevance for rare diseases and constitutes a milestone in the Europe-wide standardization of Patient-Centered Outcome Measures (PCOMs) and PROMs for rare diseases. It has been made possible through the joint collaboration between Orphanet, Mapi Research Trust/ICON and ERN EuroBloodNet (VHIR, APHP), and the active contribution of ERNs and ePAGs. |
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EURORDIS - 14th and 24th November 2022 |
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Clinical Practice Guidelines Webinar
EURORDIS had organized 2 CPG webinars on 14th and 24th of November - one on Appraisal of an existing guideline and the second one on Roadmap to implementing a Guideline. The webinars were about the good practices in regards to appraisal and/or implementation of CPGs in the context of the ERNs. They were mainly addressed to the patient community.
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ABM 2023 - UPDATE! |
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The Annual Board Meeting (ABM) has been postponed to March 22 & 23, 2023! |
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CPMS PANEL DISCUSSIONS |
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The number of panels created by ERN-LUNG members are still very low. To encourage more activity from the members, the NCT schedules one panel a month. In case you do have panel discussions, please be sure to close the panel afer the discussion is completed, as this will enable you to participate in the reimbursement scheme which allows every HCP panel lead to receive 200€ for each completed panel. |
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EURORDIS BLACK PEARLS AWARD 2023 |
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The EURORDIS Photo Award allows people suffering from rare diseases to visually express what living with a rare disease can be like and share their story with the rare disease community. |
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NEW ERN BROCHURE OUT NOW! |
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Check out the updated ERN brochure! |
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CPMS Panel Discussion (January 2023)
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Annual Board Meeting (ABM) 2023
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➔ 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 |
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The call for Research Mobility Fellowships aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence. |
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The first aim is to encourage sharing of knowledge on rare diseases and rare cancers of health care professionals, researchers and patients. The second aim is to enable or increase the participation of usually underrepresented countries in Europe (see below) in new and existing research networks. |
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The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients |
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ERN-LUNG Coordinating Center: University Hospital Frankfurt
Theodor-Stern-Kai 7 60596 Frankfurt am Main, Germany
Copyright 2021 ern-lung.eu | All Rights Reserved
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