EJP RD HIGHLIGHTS
EJP RD – Pre-announcement call for Innovation Projects
The European Joint Programme on Rare Diseases (EJP RD) will implement the present internal (open to EJP RD beneficiaries and their linked third parties) call for collaborative innovation projects to improve RD clinical trials methodologies in limited populations.
EJP RD – Joint Transnational Call 2021 on social sciences and Humanities Research
The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear future benefit for patients.
EJP RD PRESENTING AT EMA’S Workshop on Support for Orphan Medicines Development
EJP RD will be presenting at The European Medicines Agency’s Workshop on Support for Orphan Medicines Development which will take place via broadcast on 30 November 2020.
The Economist Intelligence Units report on rare neurological diseases challenges
EJP RD member and Coordinator of 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 report entitled “Navigating rare neurological diseases: meeting the challenge for policy makers, patients and healthcare professionals “.
EJP RD – video
The NEW EJP RD video is available! What is the EJP RD? How EJP RD works? What kind of support EJP RD provides? How to contact EJP RD? Do you want to have all the answers? Then watch the video and subscribe to our NEW EJP RD YouTube channel!
EJP RD – SHORT GUIDE ON PATIENT PARTNERSHIPS IN RARE DISEASES RESEARCH PROJECTS
The guide aims to encourage fruitful, sustainable and enduring partnerships between scientists and patient organisations, co-leading the way for systematic patient-centered research. Providing definition, examples, testimonials of patient partnerships, describing its benefits, preventing common pitfalls and accompanying applicants, this guide will support applicants to describe the role and added value of patient partnerships in research proposals.
RD-Connect GPAP-Phenostore Webinar
RD-Connect GPAP will present the new module GPAP-Phenostore, used to collect standardised phenotypic information from individuals whose omics data will be analysed. The online Webinar will take place next Thursday 26th November from 15h (CET) to 16h (CET).
Latest news
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 Read more about EMA’s Public stakeholder meeting: development and authorisation of safe and effective COVID-19 vaccines in the EU[…]
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 Read more about 2nd TransplantChild workshop : Novel strategies in paediatric transplantation[…]
The Executive Summary of the ECRD conference is now available
The Executive Summary of the 10th European Conference on Rare Diseases and Orphan Products held on 14 – 15 May 2020, is now available online. The interactive Executive Summary is a document compiling the key takeaways from the conference, highlights from each theme, key facts and figures on the event itself, full list of committee members, Read more about The Executive Summary of the ECRD conference is now available[…]
RD-Connect GPAP-Phenostore Webinar
RD-Connect GPAP will present the new module GPAP-Phenostore, used to collect standardised phenotypic information from individuals whose omics data will be analysed. An introductory video of this new module can be accessed here. The online Webinar will take place next Thursday 26th November from 15h (CET) to 16h (CET). If you would like to attend, Read more about RD-Connect GPAP-Phenostore Webinar[…]
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 Read more about Survey on administration devices for children’s care[…]
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 Read more about The Economist Intelligence Unit report on rare neurological diseases challenges for policy makers, patients and healthcare professionals[…]
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 Read more about Remembering Prof. Dr. Gert Jan van Ommen[…]
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. Read more about RE(ACT) Congress and IRDiRC Conference joint online event[…]
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 Read more about The European Commission jointly evaluates the Orphan and Paediatric Regulations[…]
Rare Diseases Cures Accelerator – Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop
To showcase the importance of data sharing in rare disease drug development and to highlight the first year milestones, the Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD®) hosted the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop on Monday, October 19th. RDCA-DAP is a platform that serves Read more about Rare Diseases Cures Accelerator – Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop[…]