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
Depression and anxiety are common in children and indicate a problem with mood or anxiety processing. Depression and anxiety disorders can develop in children at any age, from preschool through adolescence. A combination of life experiences, inherited genes, and other factors influence who develops anxiety or depression and when. Depression and anxiety can cause difficulties
We are very pleased to announce our collaboration with Cittadinanzattiva APS, through its branch, Active Citizenship Network (ACN). Cittadinanzattiva APS is an Italian civic organization, founded in 1978, which promotes citizens' activism for the protection of rights, the care of common goods, and the support for people in conditions of weakness. In 2001, the Active
There are still many health conditions which only affect the paediatric population, this would be the case for 80% of rare diseases that lack approved therapeutic options. Clinical trials are essential for the development of new medicines. In the last years, in Europe the number of clinical trials for the paediatric population has increased. At