General Information
Are you a young person aged 12 to 18 living with a rare disease or family of someone who is?
Are you a young person with an interest in healthcare, biomedical research, and the rights of young patients?
Are you willing to help make paediatric rare disease research more inclusive and patient-centred by co-designing tools and validating outputs alongside leading European researchers, clinicians, regulatory agencies, and pharmaceutical companies?
If yes, join the paediatric Patient Expert Group (PEG) second cohort!
Young people’s active participation in paediatric research and drug development ensures their priorities shape decisions about their own health.
The European INVENTS project (HORIZON-RIA, N°101136365, 2023–2028), coordinated by INSERM, brings together 15 partners across Europe to develop innovative approaches to evaluating treatments for paediatric rare diseases, where small patient populations and disease heterogeneity make conventional clinical trials unfeasible. TEDDY, the European Network of Excellence for Paediatric Clinical Research, establishes and coordinates the Paediatric Expert Group (PEG) within the project, ensuring the structured involvement of young patients in research activities and project governance.
The involvement of the Patient Expert Group (PEG) in decision-making processes
As a PEG member, you will have the opportunity to:
- Review INVENTS research documents on silico models, real-world data, and treatment evaluation for paediatric rare diseases
- Co-design outputs that capture young patients’ priorities in managing their condition and participating in research
- Validate research outputs before they are finalised
- Build research literacy, disease knowledge, and patient agency through interactive sessions drawing on the experience of living with a rare disease
- Attend face-to-face and virtual meetings across Europe, in English
Application
- Participants will be selected according to the following criteria:
- Young people aged 12 to 18 with a rare disease, or family members of someone who is
- Good English proficiency
- Motivation and interest in improving health research through participation in PEG activities
- European country of residence (fair geographic representation will be ensured)
If you are interested in joining the PEG to advocate for rare disease research, please fill in the application form via this link:
- Results will be communicated to you and your caregiver following the review process
- Applicants under 18 require parental or legal guardian consent alongside their own assent
- Your personal data will be handled confidentially and stored in secure electronic systems
- Your data will be solely used for PEG recruitment
- All applications will be evaluated by members of TEDDY and INVENTS project
For more information, please contact scientificsecretariat@teddynetwork.net
Click on the link below to explore and learn more about the training activities carried out by the PEG to date:INVENTS Project TEDDY website