New IRDiRC publication

The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the publication of a commentary on 10 years of progress and challenges of IRDiRC in the prestigious journal Nature Reviews Drug Discovery. The article summarizes IRDiRC’s vision and goals and highlights its achievements and prospects after its first decade (2011–2021). The commentary has been authored by Lucia Monaco (Consortium Assembly

January 26th, 2022|


The webinar ‘ADDRESSING THE CHALLENGES OF CONCOMITANT DEPLOYMENT OF COVID-19 AND INFLUENZA VACCINATION’ is organised by Active Citizenship Network(ACN) and will be held on 17th December 2021 at 11.00 CET. TEDDY Network will be represented by Prof. Carlo Giaquinto who will have a presentation during the roundtable with healthcare professionals. This multi-stakeholder event (civil society,

November 30th, 2021|


EPTRI is organizing the second webinar on medical devices: ‘Health technology designed for children with children’ that will be held on 16 December 2021 at 15.00 CET. Register here. Versatility is key to the development of  health technology for children and young people so that it is adaptive to their social, physical and developmental needs. Co-design and development of

November 30th, 2021|

SAVE THE DATE: XIV Foresight Training Course – The health emergency: regulatory crash and future perspectives, Friday 10 December 2021 at 11:20AM (CET)

Fondazione Gianni Benzi organises the XIV Foresight Training Course “The health emergency: regulatory crash and future perspectives” that will be held virtually on December 10th, 2021 at 11.20 (CET). Register for free to the event here! Experts in the field will provide relevant insights on the following topics: the extraordinary regulatory measures put in place

November 30th, 2021|

EMA survey on Orphan Maintenance Assessment Report (OMAR) – Extended deadline

The European Medicines Agency is carrying out a survey to gather information on your current experience with the Orphan Maintenance Assessment Reports (OMARs) / Orphan Designation Withdrawal Assessment Reports resulting from the review by the Committee for Orphan Medicinal Products (COMP) of the orphan designation criteria at the time of marketing authorisation application. The OMAR

November 29th, 2021|

Improving clinical paediatric research and learning from COVID-19: recommendations by the Conect4Children expert advice group

The article summarises aspects of clinical research in paediatrics stimulated and reinforced by COVID-19 that the conect4children group recommends regulators, sponsors, and investigators retain for the future, to enhance the efficiency, reduce the cost and burden of medicines and non-interventional studies, and deliver research-equity. The group provides examples of research innovation, and follow this with

November 29th, 2021|

Should children be vaccinated against COVID-19?

The BMJ Journals published the article ‘Should children be vaccinated against COVID-19?’ which addresses the ongoing debate on the vaccination of children under 12 years of age against COVID-19. The relatively low risk posed by acute COVID-19 in children, and uncertainty about the relative harms from vaccination and disease mean that the balance of risk

November 29th, 2021|

TEDDY organises the 1st First paediatric expert patients training workshops

The first paediatric expert patients training workshop, organised by TEDDY Network in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJPRD) was kicked off on 26 November 2021. 15 participants aged from 12 to 18 years of age including patients with

November 29th, 2021|

TEDDY at the 1st International Conference on Rare Diseases and Paediatric Research

The 1st International Conference on Rare Diseases and Paediatric Research took place virtually on 18-19 November 2021. Organised by 95, Rare Alliance Greece together with Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF) and “Athena” Research Center in Information, Communication and Knowledge Technologies, the Conference was a great occasion to discuss the challenging topics related to

November 29th, 2021|

TEDDY Network among the CoE experts in the CP4EUROPE Project

The CP4EUROPE (Strengthening National Child Participation Frameworks and Action in Europe) is a project funded by the European Commission under the DG JUST – Rights, Equality and Citizenship (REC) Programme. It was kicked-off on 1 April 2021 and will last 24 months until 31 March 2023. Annagrazia Altavilla, TEDDY Chair and Mariangela Lupo, TEDDY Networking

November 29th, 2021|