We were deeply saddened to hear that the brave and inspiring Christine Lavery passed away on Tuesday 19th December 2017 in hospital surrounded by her family, following a brief illness. Christine has played an outstanding role in our Lysosomal storage diseases community and for the entire field of rare inherited diseases.
The 1st MetabERN meeting with Patient and Family Associations, which will be held at the Frankfurt Lindner Hotel, Germany, on 13th January 2018. The opinion of patient and family organisations is highly valued by the MetabERN as to build the foundation for developing long-term activities and programmes centred around high-quality patient care. The meeting represents […]
Funding transnational collaborative research through joint transnational calls is one of the major objectives of E-Rare. This is the most important and effective joint activity to enhance the cooperation between European scientists working on rare diseases and thus reducing the fragmentation of research in this field. E-Rare launches calls on a yearly basis. The topic […]
The Innovative Medicines Initiative has now launched IMI2 – Call 13 with the following topics: Assessment of the uniqueness of diabetic cardiomyopathy relative to other forms of heart failure using unbiased pheno-mapping approaches Genome-environment interactions in inflammatory skin disease The value of diagnostics to combat antimicrobial resistance by optimising antibiotic use Mitochondrial dysfunction in neurodegeneration Support and coordination action for the projects in the neurodegeneration area of […]
Date: 10-12 May, 2018 Venue: Vienna, Austria The European Conference on Rare Diseases 2018 (https://www.rare-diseases.eu) Co-organised by EURORDIS (www.eurordis.org), DIA, and for the first time Orphanet, the theme of this edition of the conference will be “Rare Diseases 360°: Collaborative Strategies to leave no-one behind”. Importantly European Reference Networks will be a transversal topic running through […]
Date: 2-4 August, 2018 Venue: San Diego, United States This symposium is an opportunity for the MPS and related diseases community to share and exchange new information, to learn about new breakthroughs in science and medicine, and develop strategies to keep us moving forward. As we look to an exciting future filled with opportunities on […]
We are pleased to announce the Recordati Rare Diseases Academy Course entitled Inherited disorders of metabolism affecting the liver: management and outcome. The course is jointly organised by the Hepatology and Metabolic Center, Leuven and the Charles Dent Metabolic Unit, London. It will be held in Leuven Belgium on 8th and 8th March 2018. It […]
The workshop, hosted by Istituto Superiore di Sanita, in Rome, Italy, will focus on the question: How can ERNs generate, appraise and utilise clinical practice guidelines, to enhance the impact and deployment of consensus guidelines. The AIMS of the workshop will be: To agree a list of terminology pertaining to Guidelines, to be used between […]
The European Commission (DG SANTE), on November 20th 2017, launched the First Clinical Patient Management System. It’s a web-based application aimed at supporting ERNs in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of Member States in Europe. By providing tools for collaboration and virtual consultations CPMS enables […]
The 20th anniversary edition of the EHFG took place 4-6 October 2017 in Bad Hofgastein, Austria, gathering over 500 participants. The EHFG is the most important health-related event in the European Union and a meeting point for experts from different fields within the health system. Different knowledge and different experiences are brought together to the […]