DEADLINE EXTENDED: 5 NOVEMBER 2021

Are you an adolescent aged from 12 to 18 interested in the themes of health, biomedical research, healthcare, and children rights?
Are you a patient with a chronic rare disease interested in getting the skills to contribute in developing and shaping research making it more suitable for children?
If yes, this paediatric expert patients training workshop is for you!

The workshop, devoted to 15 paediatric patients in Europe, is organised by TEDDY European Network of Excellence for Paediatric Research (www.teddynetwork.net) in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJPRD).

The EJP RD is an EU-funded project aimed at raising the level of knowledge and awareness within the rare diseases (RD) research, and train expert patients on scientific innovation and translation research aspects through workshops, education material and activities for patients.

This course aims at making young patients like you ready to actively participate in scientific research and play an important role in improving research and healthcare services for all patients by contributing with your own specific experience.

In order to do this, it is necessary you are well trained and properly educated on the main themes of scientific and biomedical research.

Education of young people is therefore essential to incorporate you as advisors along the drug development process and facilitate the implementation of children rights allowing you to participate in decisions regarding your health. A patient-centred approach can improve the capacity of collaboration with the different agents who participate in the translational research process and in the development of innovative medicines.

The training workshop will foresee case studies, practical activities & discussions in order to make easier for you the comprehension of the topics presented and to assess if the expected objectives are reached.

The workshops will be performed in English and delivered by paediatricians, investigators, psychologists, representatives of patients’ associations, YPAGs facilitators, legal, ethical and regulatory experts.

This year, the workshop will be organised in online mode. The workshop will be divided into 4 sessions (one session per month) of maximum 2 hours and a half. The first session will start in the second half of November 2021 and will end on the 28th of February 2022 with the organization of a raise awareness activity to celebrate the worldwide Rare Disease Day.

You can find below the timeline of the meetings:

 

If you are interested in the course and advocate for rare disease research, please fill in the registration form that you can find at this link: https://forms.office.com/r/gigjbVSwaS

The deadline for sending the application is November 5th.

Please be informed that your personal data will be kept strictly confidential and all information will be handled through very secure electronic systems and used only for the purpose of the meeting.

All the applications will be evaluated by a Project Committee composed of members from TEDDY European Network of Excellence for Paediatric Research and Sant Joan de Déu Research Foundation that are leading this initiative. Results will be communicated to you and your parents at November 2021.

The participants will be selected according to the following criteria:

  • Good English proficiency
  • Age (between 12 and 18)
  • Country (in order to guarantee a fair geographic representation, no more than 2 minors per country will be selected)
  • Motivation and interest in improving health research
  • Participation in specific advisory groups or paediatric patients’ organisations.

In case of selection, a specific written parental authorization and an assent form will be required.