Training for patient representatives and advocates on leadership and communication skills

  • 26 October 2023 - 09:00
  • Gdańsk, Poland
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26th – 27th October 2023.
All applicants will receive an email on the status of their application (if accepted, in reserve list or not accepted) by end May 2023.

The International Course “Training for patient representatives and advocates on leadership and communication skills” is part of a series of training activities proposed by the EJP RD. EJP RD is a European Commission funded project (Grant Agreement 825575, 2019 – 2023) with the goal to create a comprehensive sustainable ecosystem, allowing a virtuous circle between research, care and medical innovation.

This International course is part of Work Package 15 of the EJP RD, “Capacity building and training of patients and researchers in Rare Disease research and process”, Task 15.3 “Training for patient representatives and advocates on leadership and communication skills”. WP and Task Leader: EURORDIS -Rare Disease Europe, France.

The Course is a 2 days training preceded by preparatory pre-training elements. The edition of 2023 is organised by MUG, Medical University of Gdańsk, in close collaboration with WP15 and Task Leader EURORDIS -Rare Disease Europe, France.

The course aims to teach participants presentation, negotiation and leadership skills, through plenary presentations and interactive sessions, in order to improve their ability to communicate and represent needs in an assertive way, to influence important decisions and to guide the strategic decision-making, when engaging with healthcare providers and other rare disease stakeholders.

With support from ACCURARE Turkey and ISS Italy.

  1. Advocacy – how to talk about rare diseases with different groups of interlocutors: doctors, officials, teachers, politicians – Kasia Świeczkowska
  2. Burnout aid (recognition and recovery)- Agata Zdun-RYżewska
  3. Negotiation skills – How to negotiate with public partners – Michał Brzeziński
  4. How to build a team, not destroy it? Dr Iwona Simion
  5. Wealth of information creates a poverty of attention. How to talk so that everyone will listen – Tomasz Grybek
  6. How to identify problems/conflicts within the community (health systems, social care etc.) – Dr Maria Libura

The course is composed of presentations led by the experts, interactive question & answer sessions between speakers and participants and small group exercises. The course will be preceded by preparatory pre-training elements.

To ensure active participation and exchange with teaching staff and participants, the International course is open to a maximum of 60 patient representatives. A selection process will be applied based on the participants’ background and involvement in patient associations and ERNs. The selection of the participants will be carried out in agreement with Task Partners (EURORDIS, MUG Gdańsk).

To register please fill the application form here before April 26th 2023.

There is no registration fee or cost for the training. The cost of attende’s accommodation, meals during the training hours and training materials will be covered by EJP RD. Any additional expenses incurred by attendees will not be covered.

Travel expenses will not be covered as part of the training. However, 21 fellowships will be awarded to attendees to cover travel costs (maximum reimbursement of 435€ per fellow). Please indicate in the registration form if you would like to apply for a travel fellowship.

The learning assessment will be based on the work carried out in the pre-training and hands-on sessions. A satisfaction survey will be circulated to participants at the end of the training course.

At the end of the course a certificate of attendance will be awarded to the participants who attended 100% of the course. No credits of Continuing Education in Medicine will be issued.

Medical University of Gdańsk – Marii Skłodowskiej-Curie 3a, 80-210 Gdańsk, Poland

If you have questions please write to Karolina – (cc


  • Start Date:26 October 2023
  • Start Time:09:00
  • End Date:27 October 2023
  • End Time:18:00
  • Location:Gdańsk, Poland