{"id":20906,"date":"2024-05-26T12:44:35","date_gmt":"2024-05-26T10:44:35","guid":{"rendered":"https:\/\/ela-international.preprod.melisagency.fr\/?page_id=20906"},"modified":"2025-01-09T12:40:29","modified_gmt":"2025-01-09T11:40:29","slug":"european-joint-programme-rare-diseases","status":"publish","type":"page","link":"https:\/\/elainternational.eu\/en\/research\/european-joint-programme-rare-diseases\/","title":{"rendered":"European Joint Programme on Rare Diseases"},"content":{"rendered":"\n\n<section class=\"contenus-titre-texte\">\n    <div class=\"contenus-titre-texte-container container-content\">\n        <div class=\"contenus-titre-texte-header mobile-flex-display\">\n                        <h2><strong>European Joint Programme <\/strong> on Rare Diseases <\/h2>\n                                <\/div>\n            <\/div>\n<\/section>\n\n\n<style>\n.text-image-container-has-background {\n    background-color: #E6EEF1;\n    padding-top: 20px;\n}\n.text-image-container-has-background .image-text.image-left .image::after {\n    display: none;\n}\n<\/style>\n\n<section class=\"text-image-section \">\n    <div class=\"container-content-small\">\n        <div class=\"image-text image-left \">\n\n            \n            <div class=\"image\">\n                <img decoding=\"async\" src=\"https:\/\/elainternational.eu\/wp-content\/uploads\/2024\/05\/Group-131.jpg\" alt=\"\">\n            <\/div>\n            <div class=\"text\">\n                <h3 class=\"heading4\">\n                    Focus on European funding for research on rare diseases                <\/h3>\n                <p>\n                    <p>Rare diseases affect around 30 million people in Europe, yet each one affects less than 5 out of every 10,000 people. These figures reflect the multiplicity and diversity of these diseases. Due to a lack of knowledge, patients are faced with the difficulty of diagnosis and therapeutic wandering, despite sometimes severe handicaps.<\/p>\n \n                <\/p>\n\n                \n            <\/div>\n            \n        <\/div>\n    <\/div>\n<\/section>\n\n\n\n\n<section class=\"contenus-titre-texte\">\n    <div class=\"contenus-titre-texte-container container-content\">\n        <div class=\"contenus-titre-texte-header mobile-flex-display\">\n                                <\/div>\n                    <div class=\"contenu-texte\">\n                <p><b><span lang=\"EN-GB\">Since January 2019, the European Union has developed European Joint Programmes<\/span><\/b><span lang=\"EN-GB\">\u00a0(EJP) for funding research on rare diseases, which aim to structure research on these diseases in Europe. These programmes are transnational and bring together major players in rare disease research in Europe. They are co-funded by the Member States. Europe is financing these projects to the tune of 55 million euros over five years. Funding for these programmes began in January 2020. In France, the Ministry of Research has designated the French National Institute of Health and Medical Research (INSERM) to support these programmes and patient associations at a European level. Accelerating the diagnosis and improving the understanding and mechanisms of these diseases is the aim of this approach.<\/span><\/p>\n            <\/div>\n            <\/div>\n<\/section>\n\n\n\n<section class=\"contenus-titre-texte\">\n    <div class=\"contenus-titre-texte-container container-content\">\n        <div class=\"contenus-titre-texte-header mobile-flex-display\">\n                        <h3><strong>Four main<\/strong> objectives<\/h3>\n                                <\/div>\n                    <div class=\"contenu-texte\">\n                <ul>\n<li><strong>Supporting <\/strong>research in the field of rare diseases<\/li>\n<li>Providing <strong>access to a virtual platform of<\/strong> data and resources needed to accelerate research<\/li>\n<li><strong>Ensuring the training of<\/strong> patients, researchers and staff involved in rare diseases<\/li>\n<li><strong>Fostering translational research* and clinical trials<br \/>\n<\/strong><em>*Translational Research: linking basic research with clinical trials to develop treatments and drugs<\/em><\/li>\n<\/ul>\n            <\/div>\n            <\/div>\n<\/section>\n\n\n\n<section class=\"contenus-titre-texte\">\n    <div class=\"contenus-titre-texte-container container-content\">\n        <div class=\"contenus-titre-texte-header mobile-flex-display\">\n                        <h3><strong>Who can benefit <\/strong> from these programmes?<\/h3>\n                                <\/div>\n                    <div class=\"contenu-texte\">\n                <p>These programmes bring together a large number of <strong>scientific experts<\/strong>, both researchers and academic clinicians, working on rare diseases. University hospital facilities bring together the best specialists in these diseases and offer a work environment at the cutting edge of new technologies. <strong>European reference networks<\/strong> are also involved in these projects. They provide health professionals with access to expert assessments that may not be available in their own country. Finally, <strong>patient associations<\/strong> have become indispensable. The expert assessment of patients and their knowledge of their disease represents an invaluable added value for research work in these diseases and reinforces the legitimacy in the eyes of institutions.<\/p>\n            <\/div>\n            <\/div>\n<\/section>\n\n\n\n<section class=\"contenus-titre-texte\">\n    <div class=\"contenus-titre-texte-container container-content\">\n        <div class=\"contenus-titre-texte-header mobile-flex-display\">\n                        <h3><strong>The terms and conditions:<\/strong><\/h3>\n                                <\/div>\n                    <div class=\"contenu-texte\">\n                <ul>\n<li>Treating <strong>rare diseases<\/strong> as defined by the European definition (less than 5 in 10,000 people)<\/li>\n<li><strong>Transnational<\/strong> collaborations (minimum 4 EU member countries to which other countries listed as associate members may be associated).<\/li>\n<li><strong>Interdisciplinary Research Projects<\/strong><\/li>\n<li>Cover at least one of the following areas:<\/li>\n<li><strong>Accelerate diagnosis<\/strong><\/li>\n<li><strong>Understand the disease and its mechanisms<\/strong><\/li>\n<\/ul>\n<p>In order to fulfil these missions, the institutions build on existing resources, networks and experiences in Europe in the field of rare diseases. The <strong>international dimension of<\/strong> these programmes makes it possible to take into account the advances of all the countries involved in the field and to pool skills and research efforts. In Europe (eligible members are EU members with other associate members including Switzerland, Czech Republic, Lithuania, Poland, Hungary, Slovakia, Estonia, Turkey and Canada).Non-listed countries (e.g. UK or Norway) may be associated but will not be eligible for funding under the EJP Programme.<\/p>\n            <\/div>\n            <\/div>\n<\/section>\n\n\n<style>\n    .separateur {\n        height: 20px;\n        background-color: #F5B6D2;\n    }\n<\/style>\n\n<div id=\"maj\" class=\"separateur-container container-content\">\n    <div class=\"separateur\"><\/div>\n<\/div>\n\n\n\n\n<section class=\"contenus-titre-texte\">\n    <div class=\"contenus-titre-texte-container container-content\">\n        <div class=\"contenus-titre-texte-header mobile-flex-display\">\n                        <h3><strong>Involving the knowledge and experience of patient organisations in these programmes helps to accelerate research and development.<\/strong><\/h3>\n                                <\/div>\n                    <div class=\"contenu-texte\">\n                <p>Today ELA International is involved in 2 European programmes, for which it will receive funding to cover its shares as a partner. ELA\u2019s involvement in these programmes gives the association a European dimension and represents a real added value for research institutions developing programmes on leukodystrophies.<\/p>\n            <\/div>\n            <\/div>\n<\/section>\n\n\n<section class=\"membres\">\n    <div class=\"membres-container container-small container-content\">\n                <div class=\"membre-item mobile-flex-display  membre-photo-left\">\n            <div class=\"membre-img\">\n                <img decoding=\"async\" src=\"https:\/\/elainternational.eu\/wp-content\/uploads\/2024\/06\/medecine-EllyHol.jpg\" alt=\"\">\n            <\/div>\n            <div class=\"membre-infos\">\n                <h5>Elly Hol <\/h5>\n                <h6>University of Utrecht &#8211; The Netherlands<\/h6>\n                <h5>Alexander Disease<\/h5>\n                <p>\n                The first programme is about Alexander disease. The objective is to better understand the process of the outbreak of the disease and its development. It is led by Elly Hol, Professor of Neuroscience at the University of Utrecht in the Netherlands. It involves 7 research teams from 6 countries (Sweden, Czech Republic, Israel, Spain, Luxembourg, New Zealand) and will last 3 years. The total amount of this programme is \u20ac1,287,050. ELA will be funded by \u20ac 24,550 to enable its participation in five meetings and to welcome two researchers from each partner team to the annual ELA Families \/ Researchers conference for the duration of the programme.                <\/p>\n                            <\/div>\n        <\/div>\n                <div class=\"membre-item mobile-flex-display  membre-photo-left\">\n            <div class=\"membre-img\">\n                <img decoding=\"async\" src=\"https:\/\/elainternational.eu\/wp-content\/uploads\/2024\/07\/medecine-Vivi-Heine.jpg\" alt=\"\">\n            <\/div>\n            <div class=\"membre-infos\">\n                <h5>Vivi Heine<\/h5>\n                <h6>University Medical Centre of Amsterdam &#8211; The Netherlands<\/h6>\n                <h5>NG4Leuko <\/h5>\n                <p>\n                The second NG4Leuko programme is led by Vivi Heine, Pediatrician in Neuroscience at the University Medical Centre of Amsterdam in the Netherlands. This research programme will study the interactions between neurons and glia* in certain forms of hypomyelinating leukodystrophies including Vanishing White Matter (VWM) syndrome, metachromatic leukodystrophy (MLD) and Canavan disease. It has 5 research teams spread over 5 European countries (Italy, Germany, France, Portugal, Luxembourg), and it will take place over 3 years.The total amount of this programme is \u20ac1,282,000. ELA is funded by to \u20ac40,000 to cover the organisation of a scientific conference with around 20 participants and the development of a dedicated web page: NG4Leuko                <\/p>\n                            <\/div>\n        <\/div>\n            <\/div>\n<\/section>\n\n\n\n\n<div class=\"single-button\">\n<div class=\"container-small\">\n    <a href=\"https:\/\/ng4leuko.com\/\" target=\"_blank\" class=\"btn-primary\">ng4leuko.com<\/a>\n<\/div>\n<\/div>\n\n\n\n<section class=\"latest-articles\">\n    <div class=\"contenus-titre-texte-container container-content\">\n        <div class=\"contenus-titre-texte-header\">\n            <h3><strong>Related<\/strong> articles<\/h3>\n            <a href=\"https:\/\/elainternational.eu\/actualite-resultats-de-la-recherche\/\" class=\"btn-inverse\"><svg width=\"17\" height=\"15\" viewBox=\"0 0 17 15\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n            <path d=\"M0 7.5H15M15 7.5L9.78261 1.5M15 7.5L9.78261 13.5\" stroke=\"#DF156E\" stroke-width=\"2\" \/>\n            <\/svg> News and results<\/a>\n        <\/div>\n    <\/div>\n    <div class=\"latest-articles-container container-small\">\n                                        <article class=\"article__content\">\n                <header class=\"article_metadata\">\n                    <span class=\"article_cat\">\n                        Luxembourg                    <\/span>\n                    <time datetime=\"2018-07-07\">\n                        19 October 2026                    <\/time>\n                    <!-- TODO -->\n                    <!-- <span class=\"tag_badge\">Mise \u00e0 jour<\/span> -->\n                <\/header>\n                \n                <a href=\"https:\/\/elainternational.eu\/en\/actualites\/maria-teresa-ela-dictation\/\">\n                    <h3>HRH Grand Duchess Maria Teresa, one-day teacher for the ELA Dictation<\/h3>\n                    <p><\/p>\n                <\/a>\n            <\/article>\n                                <article class=\"article__content\">\n                <header class=\"article_metadata\">\n                    <span class=\"article_cat\">\n                        International                    <\/span>\n                    <time datetime=\"2018-07-07\">\n                        14 October 2026                    <\/time>\n                    <!-- TODO -->\n                    <!-- <span class=\"tag_badge\">Mise \u00e0 jour<\/span> -->\n                <\/header>\n                \n                <a href=\"https:\/\/elainternational.eu\/en\/actualites\/aurora-pujol-2026-moser-prize\/\">\n                    <h3>Aurora Pujol winner of the 2026 Moser Prize<\/h3>\n                    <p><\/p>\n                <\/a>\n            <\/article>\n                                <article class=\"article__content\">\n                <header class=\"article_metadata\">\n                    <span class=\"article_cat\">\n                        France                    <\/span>\n                    <time datetime=\"2018-07-07\">\n                        14 September 2026                    <\/time>\n                    <!-- TODO -->\n                    <!-- <span class=\"tag_badge\">Mise \u00e0 jour<\/span> -->\n                <\/header>\n                \n                <a href=\"https:\/\/elainternational.eu\/en\/actualites\/153-french-families-gathered-at-center-parcs\/\">\n                    <h3>153 French families gathered at Center Parcs<\/h3>\n                    <p><\/p>\n                <\/a>\n            <\/article>\n                    <\/div>\n<\/section>\n\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":20409,"parent":20800,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-20906","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.4 - 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