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 …
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 …
Genetik Alliance UK has conducted a study on the hidden costs of Rare Diseases, assessing how best to measure and evaluate the true costs of managing rare conditions. More info here Read the full report here
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 …
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 …
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 …
EU Factsheet on the Marie Skłodowska-Curie Actions supporting researchers work and training. Since 1996, 98 000 researchers have benefited from the programme.
The EU Joint Action on Rare Cancers kick-off meeting was held on November, 7th. The European Commissionner for Health, Vytenis Andriukaitis mentionned European Reference Networks in his speech, as the JARC will be cooperating with ERNs on Rare Cancers. The EU Commissionner for Health pointed out: “[ERNs] are an excellent example of …
Developped by the OECD in cooperation with the European Commission, this publication provides updated analysis of the health status of EU citizens and the performance of health systems. Read the “Health at a Glance: Europe 2016” report here Look at the Infography here More information here
Following the ERN Technical Assessment (eligibility checks, documentation review, and on-site audit) ongoing since the proposal submission in June, VASCern, the HCP Coordinating Center (Hospital Bichat, CRMR Marfan) and its HCP member applicants have received very positive assessment reports from the Independant Assessment Body (ACSA) mandated by the European Commission. …
