Expression of interest to participate in a Paediatric Patient Expert Training in the context of the ERDERA Project
GENERAL INFORMATION
Are you an adolescent between 12 and 18 years old with an interest in healthcare, biomedical research, children’s rights, and innovative methodologies in clinical research? Are you a patient living with Rare Diseases? Are you willing to acquire the skills to contribute to making the research world more inclusive for young patients and child-centred?
If yes, join our Paediatric Patient Expert Training!
Empowering young people is crucial for incorporating their opinions in the research and drug development process, communicating unmet priorities to stakeholders, and enabling them to participate in decisions regarding their health.
Under the framework of the European ERDERA project (Horizon – HLTH-2023-DISEASE-07; Project 10115659), in collaboration with Rare Diseases Greece and with the support of KRIKOS ZOIS, the TEDDY European Network of Excellence for Paediatric Research developed the first edition of a yearly age-tailored training for young people, seeking to educate and empower children and adolescents about the progress of biomedical research. This training will provide tailored educational content in English, which will be available for translation and adaptation into national languages. Training materials include child-friendly resources, videos, serious games, webinars, and podcasts.
You can view the call for participants in the following link:
You can view the agenda in the following link:
Applications are now open to participate in the selection procedure (more information below).
LEARNING OBJECTIVES
This initiative is designed for young patients like you to actively participate in scientific research and express their own views!
It will help you play an important role in improving research and healthcare services for thousands of young patients worldwide who need effective therapies.
First of all, to be an active contributor, you need to be well-trained, informed and properly educated on the main subjects related to scientific and biomedical research on rare diseases. Insightful training sessions will increase your knowledge on the subject by providing training material, workshops and an overview of scientific innovations and research. Engaging activities will be held in English, and the participants will be invited to attend both face-to-face and virtual meetings.
PRELIMINARY PROGRAM
This first face-to-face training will be held on May 2-3, 2025, in Athens, Greece.
The training will foresee practical activities and discussions to ease your understanding of the topics.
What to Expect?
- Pre-training assessment – Selected participants will complete an online test to assess their knowledge and interests, ensuring a personalized learning experience.
- Interactive sessions & play-to-learn activities – Led by pediatricians, researchers, psychologists, patient representatives, YPAG facilitators, and ethical/regulatory experts.
- Engagement in research – Gain the skills to actively contribute to research projects, improve communication with stakeholders, and help shape future studies.
- Future opportunities – Trained participants will be invited to take part in upcoming ERDERA activities and collaborations with European foundations.
APPLICATION
The participants will be selected according to the following criteria:
- Patients living with Rare Diseases.
- Good English proficiency.
- Age between 12 and 18.
- European country (a fair geographic representation will be guaranteed).
- Motivation and interest in improving health research through participation in specific advisory groups or paediatric patients’ organizations (based on the outcome of a pre-questionnaire).
If you are interested in joining the Paediatric Patient Expert Training to advocate for Rare Disease research, please fill in the application form via this link or QR Code:
The deadline for sending your application is April 12th, 2025. All the applications will be evaluated by the members of the TEDDY European Network of Excellence for Paediatric Research. Your parents and you will be informed about the selection results by April 19th, 2025.
If you are under 18, legal consent from your parents or legal guardians, as well as your assent form, will be required. If you are of legal age, your consent will be required.
Please be informed that your personal data will be kept strictly confidential. All information will be handled through very secure electronic systems and used only for the purpose of the initiative.
Join us in Athens to expand your knowledge and become an active voice in paediatric research!