Training for patient representatives and advocates on leadership and communication skills

10^th – 11^th November 2022.

The training course will be held in an ONLINE FORMAT, given the uncertainties linked to the evolution of the Covid-19 pandemic and to the international situation.
Respondents who are not selected and contacted by email by the 3^rd of May should consider themselves on a reserve list until the 3^rd of October 2022.
All applicants will receive an email on the status of their application (if accepted, in reserve list or not accepted) by the 3^rd of October 2022.
After this date the selection process will close, and we hope that the non-selected respondents will apply for the next edition of the training course.

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.

Course Director (Ed 2022): Dr Claudio Carta, ISS.

The Course is a 2 days training preceded by webinars. The edition of 2022 is organized by ISS, Istituto Superiore di Sanità, in close collaboration with WP15 and Task Leader EURORDIS -Rare Disease Europe, France, and the other EJP RD task partners: ACU/ACURARE–Acibadem Universitesi, Istanbul, Turkey, and MUG -The Medical University of Gdańsk.

In collaboration with UNIAMO Federazione Italiana Malattie Rare.

The course aims to teach participants presentation, negotiation and leadership skills, through plenary presentations and role-playing 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. The course will moreover promote basic knowledge on networks, healthcare pathways, integrated care, e-health, research, therapeutic development and knowledge generation.

The course is composed of presentations held by the experts and interactive question & answer sessions between speakers and participants. On the second training day, hands-on exercises and role-playing session are planned.
The course will be preceded by preparatory webinars.

The International course is open to patient representatives involved in the 24 ERNs, including members of the European Patients Advisory Groups (ePAGS), and other RD patient advocates.

To ensure active participation and exchange with teaching staff and participants, a maximum of 30 attendees will be admitted. 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 Paris, ISS Rome, ACU/ACURARE Istanbul, MUG Gdańsk).

Registration is now open FOR RESERVE LIST ONLY at this LINK until the 29^th of April 2022.

The course and the registration are free of charge. The course organisers will not cover expenses incurred by the participants in any case.

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

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

English

ONLINE on the Microsoft Teams Platform of the EJP RD

If you have questions please write to Dr. Claudio Carta: claudio.carta@iss.it (in Cc laura.cellai@iss.it)

See the programme here.