The European Commission has published a Call for proposals for Projects on Rare Disease Registries for approved ERNs on December, 21st. EU CALL RARE DISEASES REGISTRIES (PJ-06-2016) Aim: increase knowledge on rare diseases and develop clinical research Eligibility: only approved ERNs are eligible to be co-funded. Are eligible applicant organisations …
Presentations and report of the conference are available here
The paper on the identification of the cause of BRBN syndrome was published in the January issue of Journal of Investigative Dermatology. This collaborative research paper has been written by VASCern VASCA-WG Chair, Prof Miikka Vikkula, Prof Laurence Boon and their team members Julie Soblet, Antonella Mendola, Raphaël Helaers, Melanie Uebelhoer, HCP …
Read the EU report here
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 …
This workshop was help during in May 2016. Presentations and report here, including on: best practice guidelines in the context of rare disease European Reference Networks tools developed by the RARE-Bestpractices project to collect best practices guidelines and research recommendations methodology to appraise clinical guidelines for rare diseases the power …
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 …
