VASCERN Successful ERN Labelisation

VASCERN with its 31 HCP Members has been validated today, December 15th, by the Board of Member States representatives as an official European Reference Network, following our answer to the first ERN Call. (see: http://ec.europa.eu/health/ern/implementation/call_en ) As a reminder, VASCERN and its 31 HCP Members have applied to the first ERN…

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E-Rare 3 Call for Transnational Research Projects for Innovative Therapeutic Approaches for Rare Diseases

The European Research Area Network ERA-Net “E-Rare” for Research Programmes on Rare Diseases 3rd phase (E-Rare 3 2014-2019) includes new joint transnational calls for research proposals in order to encourage research efforts in Rare Diseases in Europe. A new E-Rare 3 call (JTC-2017) for proposals has been launched on December 5th for Transnational…

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International joint recommendations to address specific needs of undiagnosed Rare Disease patients

Read here the International Joint recommendations to address specific needs of undiagnosed Rare Diseases Patients 5 major recommendations:  1. Undiagnosed Rare Disease Patients should be recognised as a distinct population with specific unmet needs by national authorities to enable development of personalised health and social care. Although some undiagnosed diseases…

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ERNs & the EU Maltese Presidency

For the first time since its accession in 2004, Malta will hold the Presidency of the Council of the European Union from January to June 2017. Health priorities include Childhood Obesity, HIV, Data for Health and voluntary structured co-operation between Health Systems. At the Expert Group on European Health Workforce meeting, a presentation was…

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NGO Committee for Rare Diseases (UN)

The NGO Committee for Rare Diseases, a UN Consultative Committee representing Civil Society has been inaugurated at the “Global Gathering for Rare Diseases” on November, 11th 2016 at th United Nations Headquarters in New York. It “brings together knowledge and experts to promote rare diseases as a priority in global…

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COST Actions

The 25 selected projects of the COST call for proposals 2016 have been published here (starting by CA16). It includes for instance a European network for translational research in children’s and adult interstitial lung disease, a  Biomaterials and advanced physical techniques for regenerative cardiology and neurology, A European Network for Connective Tissue Calcifying Diseases or  CliniMARK: ‘good…

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