The 1st First paediatric expert patients training workshop has been done

  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,

April 14th, 2022|

Training for patient representatives and advocates on leadership and communication skills

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. 

April 13th, 2022|

11th European Conference on Rare Diseases and Orphan Products (ECRD)

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

April 13th, 2022|

International Children’s Advisory Network, Inc. (iCAN) 2022 Summit

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

April 13th, 2022|

Modeling Genomic Screening in Newborns

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,

April 13th, 2022|

Education for Children with Chronic Illness; Moving Forward in Online and Virtual Learning

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

April 13th, 2022|

Depression and Anxiety Disorder in Children and Adolescents

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

April 13th, 2022|

Memorandum of Understanding between Cittadinanzattiva APS and TEDDY Network

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

April 13th, 2022|