The European Partnership for Personalised Medicine (EP PerMed) Drafting Group, representing the European Members States group, is launching an open consultation to validate and receive input for the Strategic Research and Innovation Agenda in support for the European Partnership for Personalised Medicine, EP PerMed. The outcome of the online consultation will be considered for the SRIA finalisation (02/2023)…
The International Rare Diseases Research Consortium (IRDiRC) is pleased to announce today the release of its Rare Diseases Research Initiatives State of Play 2019-2021 Report. This report is based on scientific articles and press releases published between 2019 and 2021; it seeks to inform stakeholders and the rare diseases community about the developments and observed…
Gelareh Emami, a PhD student at the Department of Health Management at Scuola Superiore Sant’Anna, under the supervision of Prof. Giuseppe Turchetti and Dr. Valentina Lorenzoni, is investigating health system resilience in the context of rare diseases. She requests healthcare professionals (Medical doctors, Nurses, Physiotherapists, etc.) involved in the treatment of rare diseases to complete a questionnaire. The results…
RDI is partnering with the EURORDIS Rare Barometer Survey project to launch the Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease. This survey aims to identify factors that influence the process of obtaining a diagnosis and obstacles along the journey. This is a global survey, available in 26 languages.…
The GA4GH Data Access Committee Review Standards subgroup has put together a brief survey on implementation factors when using software or other automated decision tools to support Data Access Committee review. The survey should take no longer than twenty minutes. Please complete the survey by 31 May, 2022. Start Survey Additional Information This study is part of a…
The European Commission (EC) is inviting interested stakeholders to participate in the open consultation of the Strategic Research and Innovation Agenda (SRIA) of the European Partnership « Fostering an ERA for Health » (ERA4Health) by providing feedback through this online survey. The deadline for providing feedback to the Draft SRIA is October 29th, 2021. The draft SRIA…
Innovative techniques in the biomedical field (such as massive sequencing capacity, gene editing and tissue engineering) have resulted in the development of new unconventional drugs in the Advanced Therapy Medicinal Products (ATMPs) class. In this scenario, the European Paediatric Translational Research Infrastructure (EPTRI) and the EU-funded RESTORE project are collaborating to describe the map of competences available in the framework of the paediatric ATMP research in pan-European…
What are your wishes and needs for networking? And how is this changed due to the COVID-19 pandemic? We are eager to hear your view! Complete the survey here to help us improve the Networking Support Scheme, the EJP RD funding opportunity for networking. Please note: if you are a principal applicant or an evaluator…
The Big Data Steering Group has launched an initiative to develop a Data Standards Strategy that will enable the Network to more effectively leverage data to deliver evidence in support of benefit-risk decision-making on the development, authorisation and use of medicines. If you are part of Patients’ & Healthcare Professionals’ organisations or a Learned Societies, the European…