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ERN-ITHACA Projects
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ERN-ITHACA Board Meeting 2023 | Reservation Form
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The ERN can arrange travel and accomodation for one representative per HCP - though several attendants from a same ITHACA Center are welcome to the meeting. If you intend to participate and have not already, please fill out this reservation form so that we can arrange your stay in Budapest.
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EuroDysmorpho 2022 | Thank you & save the date for EuroDysmropho 2023!
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A warm thank you to all participants to the 32nd EuroDysmorpho Meeting. This long-established Congress has renewed this year in the best possible way with a new generation of geneticists, and we look forward to the next editions of this new chapter.
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EuroDysmorpho 2023 will be held in Lisbon on September 13-16, so save the date!
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The ERN-ITHACA welcome 11 new ePAGs to its network
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The ERN ITHACA's European Patient Advocacy Groups (ePAGs) network extended from 14 to 25 patients associations. Welcome to our 11 new ePAGs, coming from Spain, Romania, Slovenia, Switzerland and Serbia!
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ERN-ITHACA new ePAGs: Angelman Syndrome Greece Association (Maria Palia Georges Papadopoulos), Asociación KIF1A España, Spain (Alejandro Doval), Associtia Sindromul Coffin Lowry, Romania (Liliana Dimitriu), CTNNB1 Foundation and the Spanish CTNNB1 Association, Spain (Ana González Hernández), IDefine Europe (Kleefstra syndrome), Slovenia (Tanja Zdolsek), Kleesftra Syndrome Spain (Ines Fernandez Ulibarri), Asociación Afectados CDKL5 Global Alliance, Spain (Sandra López Cabeza), 22q ex YU, Serbia (Vesna Vujičić), AGO2 Syndrome, Switzerland (Laura léonardi), SATB2 Patient Organisation, Slovenia (Erika Stariha)
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Upcoming events
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- October 11: ERN-ITHACA Guidelines Workgroup Webinar “How to optimize patient imput"
- October 20-21: ERN-ITHACA Spina Bifida Workgroup Meeting, Italy, Roma
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November 10-12: ERN-ITHACA 8th International Meeting on Rare Disorders of the RAS-MAPK Pathway, online meeting
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- December 8-10: ERN-ITHACA Board Meeting, Budapest
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European News
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ERICA WP5 Educational Webinar 2 “Practical guide on how to use the Catalogue of services and the IMT” - Monday 24 October 2022 13:00 – 14:00 CET
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In this webinar, Anton Ussi (Operations & Finance Director at EATRIS), together with Agustin Arasanz Duque (Senior Innovation Manager at EATRIS), will provide practical guidance for using two important tools for RD researchers, developed within EU-funded projects: ERICA and EJP RD.
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Webinar will be interactive with expected audience involvement. Attendees are invited to visit both resources prior to webinar attendance and use the opportunity for live tutorial and discussion. The Catalogue of Services contains a wide range of preclinical, clinical, regulatory and development services provided by the European infrastructures ranging from samples, data & databases, technologies & facilities, models & tools to expertise & advice.
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The Innovation Management Toolbox (IMT) is a free-to-use and curated reference library of resources in rare disease translational medicine that will provide investigators with self-help resources specific to their needs.
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EURORDIS Call on the European Commission to introduce a European action plan on rare diseases
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The Beyond 1 Million Genomes project in support from the 1+MG initiative is organising the annual 1+MG/B1MG Stakeholder Forum to be held online on Thursday, the 13th of October. The theme of the day will be to explore how the efforts of 1+MG/B1MG can be scaled up and made sustainable through engagement with stakeholders. The day will cover key updates on the 1+MG Trust Framework, B1MG Maturity Level Model, and the efforts of 1+MG towards engaging with industry, followed by a panel discussion on industry engagement.
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During the afternoon session from 13:45 to 15:00 CEST, we will ask the participants to join any of the 4 breakout rooms that have been set up along the 1+MG Use Cases: rare diseases, cancer, common and complex diseases, infectious diseases.
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The goals of each breakout session will be to: 1) Identify specific challenges that could arise in adopting and taking forward the 1+MG Trust Framework, as well as the role of industry in doing so; 2) Provide recommendations on how these challenges could be navigated. Within this context and to have a rich discussion, it would be great if you can join the forum and specifically the breakout session for the "rare diseases" use case. You can register for the event through the registration link.
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Joint IRDiRC-EJP RD International Conference on Clinical Research Networks for Rare Diseases
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The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases, which will take place on December 1 and 2. The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks.
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It is not possible anymore to register for in-person participation. To register for online participation, please complete this registration form.
Find more information here.
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Call for collaborative clinical research on developmental disorders
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