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Eurordis - Rare Disease Europe

Leadership & Advocacy training

The “Training on leadership and communication skills”, organised in collaboration with the European Joint Programme on Rare Diseases, and the Medical University of Gdańsk will take place from 26th – 27th October 2023 in Gdańsk, Poland. Applications open on 15 March and close on 26 April.


Training for patient representatives and advocates on leadership and communication skills

Click on this link to read more about the training, the eligibility criteria, fellowships, training methods, etc.

Open the application form here.


    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
    2. Burnout aid (recognition and recovery)
    3. Negotiation skills – How to negotiate with public partners
    4. How to build a team, not destroy it?
    5. Wealth of information creates a poverty of attention. How to talk so that everyone will listen
    6. How to identify problems/conflicts within the community (health systems, social care etc.)


    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’ backgrounds and involvement in patient associations and ERNs. The selection of the participants will be carried out in agreement with Task Partners (EURORDIS, MUG Gdańsk).


    There is no registration fee or cost for the training. Attendee’s accommodation will be reimbursed (up to 3 nights, not exceeding the amount of €450). Those accepted on the training will need to arrange their own accommodation and follow the reimbursement procedure below. Reimbursements will be processed after the event after full attendance is confirmed. 

    Additionally, meals during the training hours, welcome dinner and training materials will be arranged and costs covered. 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. 


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


If you have questions please write to Karolina – with Rachel – in copy.

Take part in free online training

Take the free e-learning courses below! The conditions of use for all EURORDIS e-learning courses have been licensed with Creative Commons. More information on the conditions of use.


Establishing an international cooperation

⌛️ 2h30m

United Nations image

International advocacy for rare diseases

⌛️ 2h30m


Introduction to the European Union Institutions

⌛️ 2h


Ordinary Legislative Procedure – How are decisions taken by the EU?

⌛️ 1h30

Contact the Open Academy team

Rachel Butcher, Open Academy Manager - Training Coordinator