NEWSLETTER APRIL 2019
Designing the framework for a new European paediatric research infrastructure
I am very pleased to welcome you to the third newsletter of the EPTRI (European Paediatric Translational Research Infrastructure) project. Please take some time to enjoy the content of this newsletter and the important updates regarding our project.
The 3rd General Assembly Meeting held in Madrid in March has just ended and we have registered a really active discussion and an interest in promoting the role of EPTRI in a global framework of partnership able to strengthen paediatric research.
The collaborative environment and the strong commitment shown at the meeting, has indeed confirmed that we are working on the pathway of a proficient collaboration within and also outside the EPTRI partnership, working more and more to reach all the prefixed aims and face the new challenges.
We are continuing to map the paediatric research centers of excellence at EU level and we are happy to acknowledge a high interest to be involved in EPTRI. In the meanwhile, we have launched a further survey to acquire preliminary opinions and feelings from the future users, as well as information on their interests and needs in terms of access, costs and barriers to the development of new medicines for children.
We strongly believe that EPTRI can bring to a revolution in the way to approach the European policies aimed to boost the paediatric research and fill the gap in the availability of drugs and therapies duly studied and tested for the paediatric population.
EPTRI can really bring benefits on children’s health establishing an efficient framework to introduce top level innovations in paediatric drug development process.
We will continue updating you on our steps and we really hope to see one day the EPTRI dream becomes true.
On behalf of all EPTRI partnership, I invite you to enjoy our third newsletter.
EPTRI Project Coordinator
EPTRI 3rd General Assembly in Madrid
The 3rd General Assembly meeting of the European Paediatric Translational Research Infrastructure (EPTRI) was held in Madrid at the Ministry of Health, Consumption and Social Welfare on the 27th and 28th of March 2019.
EPTRI Roundtable with EU Stakeholders (March 27th, Madrid)
During the first day of the 3rd EPTRI General Assembly, a Roundtable took place with 17 European Stakeholders coming from Paediatric Networks, Research Infrastructures (RIs), European Reference Networks (ERNs), Charities, Patients’ associations, Young Patients Advisory Groups (YPAGs), Companies’ Federations, Regulatory Agencies, Governments and Authorities.
EPTRI Roundtable with Young People (March 27th, Madrid)
During the first day of the 3rd General Assembly meeting of EPTRI, held in Madrid at the Ministry of Health, Consumption and Social Welfare on the 27th of March, took place a Roundtable with seven young people members of Kids Albania, Kids Barcelona and Kids Bari. The activity was moderated by Begonya Nafria, coordinator of the Kids Barcelona group.
EPTRI Survey to Map Expertise of Units Performing Paediatric Research in Europe
New EPTRI Survey to Improve the Paediatric Medicines Administration
We want to ask children and young people to help us to investigate how much they like the medicines (and the administration route of the drug) they take and how they would like their medicines to be.
EPTRI launches a survey to gather information about potential users of the future Research Infrastructure
We are mapping people who want to be part of EPTRI in the near future as potential users. With this purpose, a survey has been designed and will be available until April 30th. It will take less than 15 minutes of your time!
“EPTRI – European Paediatric Translational Research Infrastructure. Bridging the gaps of the paediatric excellence medicine” is online on the British Journal of Pharmacy
EPTRI in Warsaw
On February 4th 2019, a meeting took place in Warsaw (Poland) at the Ministry of Health among the EPTRI Coordination Team, represented by Donato Bonifazi and Mariangela Lupo, Radosław Sierpinski, Adviser to the Minister of Health, and Marek Migdal, Director of the Instytut “Pomnik-Centrum Zdrowia Dziecka” – IPCZD (Children’s Memorial Health Institute).
EPTRI presentation in Israel
EPTRI was invited to participate in the meeting organised by ICE (Italian Trade and Investment Agency of the Italian Ministry of Economic Development) to present its activities to the Israel-EU R&D Directorate at the Israel Innovation Authority
EPTRI at the 3rd European Conference of Pharmaceutics in Bologna
This year EPTRI was invited to participate in the 3rd European Conference on Pharmaceutics, which was held in the city of Bologna (Italy) last March 26th. Nunzio Denora, from University of Bari and co-leader of the WP8 on paediatric medicines formulations and medical devices, presented a poster entitled “EPTRI: facilitating formulation science towards better medicines for children” during the poster session of the conference.
EPTRI at the BIAT meeting (Bari)
EPTRI joined Rare Disease Day 2019!
World Rare Disease Day is a very special event taking place the last day of February every year. The EPTRI consortium joined the Rare Disease Day movement focused on boosting research on paediatric rare diseases, which will help to improve the lives of millions of children around the world.
EVENTS OF INTEREST
A great number of clinicians, researchers, residents and students will come together to participate in various sessions and learning opportunities illustrating the latest research and developments in the field.
The course is coordinated by EPTRI’s partner Hospital La Paz.
Symposium and technical workshop proposals can be submitted now!
The meeting will tackle common challenges, best practices and future perspectives of RI staff training.
More info here.