In a new study, a team of researchers from Inserm, University Hospital Lille, and Université de Lille at the Lille Neuroscience and Cognition laboratory has opened up interesting avenues to improve the prognosis of preterm infants. By conducting research into congenital hypogonadotropic hypogonadism, scientists have discovered the key role that nitric oxide synthase (NOS1) plays
TEDDY is always proactive in addressing ethical, legal, social and regulatory issues of paediatric research, enhancing the awareness of the main stakeholders on the still unmet needs and peculiarities of children. TEDDY has participated in several European initiatives aimed at promoting the engagement of children and young patients in decisions regarding their health both
The UN Resolution on Persons Living with a Rare Disease was adopted in December 2021. Now, you can use all the information included in the kit to raise awareness and call action to the UN Resolution in your own country. What can you find in this kit? – A summary of the actions all
The workshop organized by the 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 (EJP RD), was held the past July 11th -15th at the University of Lyon (France) during the 2022 International Children’s Advisory Network (iCAN) Summit (please
TEDDY Network’s young persons advisory groups (YPAG) from Albania (KIDS Albania) and Bari (KIDS Bari) have joined the 2022 International Children’s Advisory Network (iCAN) Summit that was held in-person last July 11th-15th in Lyon, France. During these intense and productive 5 days of meeting, which was totally devoted to Rare Diseases (RDs), participants had the
The General Assembly of TEDDY network was held on-line on the 7th of July, within a hearing at the Council of Europe. The Council of Europe Steering Committee for Human Rights in the fields of Biomedicine and Health (CDBIO) and the Steering Committee for the rights of the child (CDENF) are developing a “Guide” aimed
Vaxneuvance vaccine The Vaxneuvance, a 15-valent pneumococcal conjugate vaccine, produced my Merck & Co. received approval by the US Food and Drug Administration (FDA) for its use in children aged six weeks through to 17 years, making it the first pneumococcal conjugate vaccine approved in almost a decade to help protect paediatric populations
TEDDY is organising the “Second Paediatric Expert Patients Training Workshop” in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJPRD). The paediatric training workshop will be held during the iCAN (International Children’s Advisory Network) summit that will take place on July
The 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), has organised the first paediatric expert patients training workshop. The workshop, held online, is now concluded and TEDDY is already preparing the second workshop of the 2022,
Child friendly and age-appropriate assent form for processing and sharing of personal data devoted to children (12-17 years) has been prepared by TEDDY Network. The form was developed, within the European Joint Programme on Rare Disease (EJP RD), based on the consent form for parents for European Reference Networks Registries (ERNs). The assent form was