TEDDY Network is pleased to support the Rare Disease Day 2018, that took place on February 28th, to raise awareness of rare diseases and their impact on patients' lives amongst the general public and decision-makers. The Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, but soon this initiative spread all
The European Medicines Agency (EMA) collaborates with a large number of patients, consumers and their organisations on aspects such as information on medicines, consultation on product-specific issues and participation in workshops and meetings. These patient and consumer experts provide the Agency with up-to-date, real life experience of living with a disease or the use of
In October 2017, the European Reference Network for rare diseases of the respiratory system (ERN-LUNG) won the competition for a grant from the European Union to establish registries of patient data and make them fully interoperable with the already existing registries. ERN-LUNG represents the network of European healthcare providers dedicated to ensuring and promoting excellence
The e-learning “ICH-Good Clinical Practice (GCP) Training Course”, promoted by Consorzio per Valutazioni Biologiche e Farmacologiche in the framework of the GAPP project, is available free of charge at the following link: www.gcptraining.cvbf.net. The course meets the Minimum Criteria for ICH GCP Investigator Site Personnel Training identified as necessary to enable mutual recognition of GCP training among trial sponsors
The last press release published by EMA (European Medicines Agency) on December 15th, 2017, reports some important highlights from the Management Board meeting about Brexit preparation and the adoption of the work programme for 2018. EMA now has just over 15 months to prepare for the move and take up its new seat in Amsterdam
On October 17th, 2017, the Parliamentary Advocates for Rare Diseases, a network of European and national members of Parliament advocating to improve the lives of people living with a rare disease, was launched by EURORDIS, the European Organization for Rare Diseases, in occasion of the event “Juggling Care and Daily Life: the Balancing Act of
From 7th to 10th March 2018, the International Congress on Research of Rare and Orphan Diseases will take place at the Istituto Ortopedico Rizzoli in Bologna, Italy and will bring together world leaders and young scientist, who will share and discuss the results of their studies and cutting-edge research. It will be an occasion to
The recently EU-funded project ID-EPTRI (European Paediatric Translational Research Infrastructure), aimed to design a new Research Infrastructure (RI) in Europe completely dedicated to Paediatrics will be launched on January 15th-16th 2018, at the Ministry of Education, Universities and Research, Sala della Comunicazione, Viale Trastevere, 76/a, Rome, Italy. The project, which is financed under the H2020-INFRADEV-01-2017
TEDDY – European Network of Excellence for Paediatric Clinical Research announces the General Assembly entitled “A new phase for paediatric clinical research: a play role for TEDDY?”, that will be held on January 14th, 2018 at Hotel Ripa in Via degli Orti di Trastevere, 3 Rome – Italy. The TEDDY Network of Excellence arose from the Task-force
Roma, January 2018 - ID-EPTRI (European Paediatric Translational Research Infrastructure) is a project coordinated by Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF-TEDDY) that granted with 3 million of Euros from funding of the European Commission. The main objective of the project lasting 24 months, is to design the framework for a new European Paediatric Research Infrastructure