Author: Tanguy Onakoy

EMA’s Public stakeholder meeting: development and authorisation of safe and effective COVID-19 vaccines in the EU

The European Medicine Agency (EMA) will organise a public meeting on 11 December 2020 to inform European citizens about the EU regulatory processes for the approval of COVID-19 vaccines and the Agency’s role in their development, evaluation, approval and safety monitoring. The COVID-19 pandemic is an unprecedented global crisis, with devastating health, social and economic […]

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2nd TransplantChild workshop : Novel strategies in paediatric transplantation

The European Research Network TRANSPLANT-CHILD is organising the  2nd TransplantChild workshop on translational research: “Novel strategies in paediatric transplantation” which will take place on November 30th, 2020 online. The main aim of the course is addressing training in paediatric transplantation according to the holistic approach of the network, providing skills to perform a common and […]

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Survey on administration devices for children’s care

We are pleased to share with you the initiatives dedicated to paediatric patients and families that the European Paediatric Translational Research Infrastructure (EPTRI) has launched in collaboration with European Paediatric Formulation Initiative (EuPFI) to help finding ways of making children’s care devices more user-friendly. The survey questions have been reviewed by the young members of the Italian, Albanian and Spanish […]

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The Economist Intelligence Unit report on rare neurological diseases challenges for policy makers, patients and healthcare professionals

EJP RD member and Coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND) Holm Graessner , alongside with Mary Kearney from the Irish College of General Practitioners and Primary Care Physician and  Antonio Federico, Professor of Neurology and Director Unit Clinical Neurology and Neurometabolic Diseases in the University of Siena were involved in the production of the Economist Intelligence Unit’s report entitled “Navigating rare neurological diseases: meeting the […]

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Remembering Prof. Dr. Gert Jan van Ommen

It is with great sadness that we’ve learned Prof. Dr. Gert Jan van Ommen passed away. EJP RD honors his creative scientific mind as well as his huge contribution and leadership of the Human Genetics department at Leiden University Medical Centre. We send our deepest condolences to his family, friends and collaborators in this difficult […]

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RE(ACT) Congress and IRDiRC Conference joint online event

EJP RD is glad to be a part of the organisation of the RE(ACT) Congress and IRDiRC Conference joint online event that will take place on 13-15 January 2021. It aims to bring together scientific leaders, patients, and policy makers to advance research on rare diseases. Patients and patient organisations will share their perspectives and experiences.  To obtain your discount, register here before 31st of December.   […]

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The European Commission jointly evaluates the Orphan and Paediatric Regulations

The European Pharmaceutical Strategy was recently released and it includes strengths and weaknesses of the legal instruments and the European Commission is preparing the review of the legislation on medicines for rare diseases and children: the Orphan and Paediatric Regulations. The EFFECTIVENESS of both regulation on the R&D of new medicines for these patients and their timely availability and coverage of unmet needs, the EFFICIENCY in improving their […]

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