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Happy New Year from the Coordination Team!
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ERN-ITHACA Projects
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ERN-ITHACA Board Meeting 2022
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Thank you all for your participation in the ERN-ITHACA Board Meeting 2022!
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You can now find on the ERN ITHACA website, in the private member area, all PowerPoint presentations as well as the recording of the Research Workshop that took place on Saturday afternoon.
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In order to help us improve next year's Board meeting organisation as well as collect data for our annual report to the European Commission, it would be greatly appreciated if you could give us your feedback on the meeting by completing this short anonymous survey.
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ERNs Evaluation Process
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The first step of the ERN ITHACA Healthcare Providers Self-Evaluation process has started on December 19th. The HCP representatives that are involved in this procedure have all been contacted with further information. This step needs to be completed until February 19th, 2023.
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All supporting materials can be downloaded from the Members Area. For your convenience, online meetings and webinars can be organised on the week of January 16th, late afternoons.
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ERN-ITHACA Call for Production of Orphanet files on Rare Diseases
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Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. It produces a series of highly-downloaded reports showcasing aggregated data covering topics relevant to all rare diseases, especially a list of rare diseases.
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Your expertise as an ERN-ITHACA Member will be of great help in updating and completing this list. Hence, as previously announced during the ERN-ITHACA Board Meeting, we would like every HCP to provide a minimum of 2 RD abstracts. Please chose your two summaries on this online document by putting down your name and email address. You will then be contacted directly by Orphanet. Thank you in advance for your precious contribution!
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ERN-ITHACA Guidelines Workgroup meeting
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On November 25, 2022, the ERN-ITHACA Guidelines Workgroup gathered in Amsterdam for a first face-to-face meeting. This team workshop allowed to lay down the strategic foundations for the functioning of the new ITHACA Guidelines Workgroup. The main objectives of this workgroup are to evaluate existing national recommendations and to publish new expert consensus statements. The team will soon reach out to you to ask for your expertise on current guidelines and new projects.
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ERN-ITHACA Patients-Clinicians Team-building Sessions
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Last November, the ITHACA Patient Council, in partnership with Eurordis, organised three patient-clinician teams building sessions supervised by professional coach Ana Merlino. This brought together 16 participants, ePAGs and Clinicians.
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The overall objective of these workshops was to improve our work perception, develop interactions, and harmonize everyone's working methods.
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The results of this pilot are very positive and have allowed us to strengthen the clinicians - patients collaboration and to identify areas for improvement. Following this first success, other team-building sessions will be scheduled.
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ERN-ITHACA Winter School on Multidisciplinary Fetal Diagnostics
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On December 8th, at the Imagine Institute in Paris, ERN ITHACA hosted the first edition of the Multidisciplinary Fetal Diagnostics Winter School. An initiative of the newly established WG on Fetal Medicine, this course gathered over 50 participants from all over Europe.
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The Winter School provided an overview of the subject matter and methodological principles in the complex field of prenatal medicine. It included masterclasses in the introduction to HPO and its application on fetal phenotypes, opportunities and limitations of fetal imaging and fetal pathology as well as prenatal clinical genetics in the area of genomic medicine.
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EuroNDD 2023 | Deadline for registration extended
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The deadline to register for the EuroNDD Workshop has been extended to January 31, 2023.
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First of its kind, this meeting aims at bringing together a broad professional audience for a multidisciplinary perspective on rare genetic neurodevelopmental disorders.
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Upcoming events
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- January 18-19: ERN-ITHACA SBoD Workshop on Urological Aspects & Paediatric Guidelines
- January 20-21: ERN-ITHACA SBoD Workshop on Final Consensus on ORPHANET Classification & Foetal Surgery
- April 20-21: EuroNDD Workshop
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European News
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EURORDIS Black Pearl Awards | Register now!
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Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives.
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The 12th edition of the Awards will take place on Tuesday, 21st February 2023 at the DoubleTree by Hilton Brussels City, Brussels, Belgium.
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The event will bring together hundreds of persons living with a rare disease, patient advocates, policy makers, including representatives from the European Parliament and Commission, scientists, healthcare professionals, industry representatives, and more from all around the world.
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Early-bird prices are available HERE until 16th January.
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European countries say 'yes' to action on rare diseases at the EU Council
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At the initiative of the Czech Republic holding the Presidency of the EU Council, a Call to Action was presented for strengthened coordination on rare diseases at the European level. The call received endorsement from 22 Member States. This is a strong indication of the support from across the European Union towards a new comprehensive rare disease strategy.
Read more about the call.
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Together4RD Policy Asks At European Parliament
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Together for Rare Diseases (Together4RD), a multi-stakeholder group that encompasses representatives of the patient community, decision-makers, European Reference Networks (ERNs) and industry, is seeking to promote a rare diseases ecosystem in Europe that puts collaboration at its centre.
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On 10 November 2022, Together4RD organised an event at the European Parliament to launch their main policy asks to foster collaboration between European Reference Networks (ERNs) and private partners. The event brought together members of the initiative, including ERNs, with stakeholders from the rare disease community and MEPs. Read more or watch the video of the event.
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EJP RD – ERN Workshop: RARE TOGETHER
The aim of this workshop is to raise awareness for the psychosocial impact of having a rare disease and form a group of researchers in the mental well-being and social sciences domain for rare diseases.
Together with you and other different stakeholders we will discuss future perspectives of rare diseases and how to be ‘RareTogether’!
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The in-person event is open to all researchers and will take place on 8-9 May 2023 at the Van der Valk Hotel, Nijmegen-Lent (NL).
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Registration is open until February 2, 2023.
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Call for collaborative clinical research on developmental disorders
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