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...
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...
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...
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...
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...
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...
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...
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...
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 Spanish Data Protection Authority published, on last February, the "Code of Conduct on the processing of personal data in the field of clinical trials and other clinical research as well as pharmacovigilance" (CoC). The CoC regulates how data protection rules...