Almost 50 representatives of rare disease patient organizations took part in the workshops on presentation, negotiation and leadership skills (Training for patient representatives and advocates on leadership and communication skills) that took place on October 26-27 at the Medical University of Gdańsk. The training was part of a series of activities proposed by EJP RD (European Joint Program on Rare Diseases), a project financed by the European Commission aimed at creating cooperation in the field of rare diseases research, care and medical innovation.
Our University has been operating in the EJP RD system for many years and its coordinator from GUMED is Prof. Aleksandra Żurowska, head of the Department of Paediatrics, Nephrology and Hypertension. Previous editions with the support of ISS from Italy and ACCURARE from Turkey were held online, this year with the participation of the Center for Rare Diseases, represented by Prof. Jolanta Wierzba from the Division of Internal and Pediatric Nursing and Karolina Śledzińska, Ph.D. from the Department of Paediatrics, Haemathology and Oncology, Internationalization Office and Rachel Butcher, Open Academy Training Manager, EURORDIS – Rare Diseases Europe, managed to organize it as a face-to-face meeting in Gdańsk. The lecturers included members of MUG: Agata Zdun-Ryżewska, Ph.D. and Katarzyna Milska-Musa, Ph.D. from the Division of Quality of Life Research and Dr. Habil. Michał Brzeziński from the Department of Paediatrics, Gastroenterology, Allergology & Paediatric Nutrition as well as Iwona Simon from the “Me too” Foundation, Katarzyna Świeczkowska from the Polish Association for Persons with Intellectual Disability (PSONI) and Tomasz Grybek from the Borys Hero Foundation.
Of particular interest were the topics of life and professional burnout, the ability to create a well-functioning, effective team, conflict resolution, self-presentation, communication and “advocacy” skills. The success of the workshops was the active involvement of participants from various countries in Europe and beyond who exchanged experience and knowledge.
Photo Paweł Sudara/MUG
EJP RD project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 825575.