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
The “Training for patient representatives and advocates on leadership and communication skills” course is organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients Advisory Groups (ePAGS), and other RD patient advocates.
This patient-led rare disease policy official event of the 2022 French Presidency of the Council of the European Union will take place fully online from 27 June to 1 July, 2022 and will span over 5 half days. This will provide the opportunity to expand outreach to key stakeholders, showcase strong political support, and build
The 2022 iCAN Summit presented by Jumo Health organized by the International Children's Advisory Network, Inc. (iCAN) will be held in-person in July 11th-15th 2022 in Lyon, France. This is the perfect opportunity to learn more about health, medicine, innovation, and science. With an emphasis on rare disease, this week-long summit is a terrific way
Children with a suspected genetic or undiagnosed disease experience diagnostic odysseys. Genomic sequencing provides a powerful diagnostic tool, thereby decreasing costs related to multiple clinical evaluations, imaging studies, and laboratory tests. This provides psychological benefits for these patients and their families. Genomic sequencing can also complement existing newborn screening programs, however, there are many technical,
Education is an essential component of social development and has an determinant impact on health, particularly, in the case of children. During the year 2020, thousands of schools and universities transitioned to a fully online learning setting. This situation has affected many students with special education needs which lost appropriate accommodations. Furthermore, some children with