VASCERN News
29 October 2025
New Toolkit on Communication in Rare Diseases
Communication is at the heart of good healthcare. In rare diseases, where uncertainty and complexity are part of daily care, every conversation matters. To support healthcare professionals in these moments, the VASCERN Psychology Transversal Working Group has created a new toolkit on How to improve communication between healthcare professionals and rare disease patients/caregivers to help strengthen trust and understanding between healthcare teams, patients, and caregivers.
Supporting Good Communication in Rare Disease Care
Developed by psychologists, clinicians and patients/caregivers from across Europe, this toolkit offers practical guidance to help improve communication in rare diseases. It focuses on empathy, listening, and clarity—simple but often overlooked skills that shape the patient experience.
The toolkit brings together real-life insights on how to handle difficult conversations, explain complex information in simple terms, and adapt communication to each patient’s needs. It recognises that healthcare communication is not only about what is said, but also how it is said.
A Practical Resource for Healthcare Professionals and Students
This Healthcare Communication Toolkit introduces role play exercises as a training method. These exercises allow doctors, nurses, and medical students to practise patient–doctor communication in realistic settings and reflect on their approach.
It also highlights common communication challenges—such as information overload, limited consultation time, or managing emotions—and offers practical advice on how to overcome them. Each example is designed to help healthcare professionals improve their confidence and make patients feel seen, heard, and supported.
Created by the VASCERN Psychology Transversal Working Group
This resource was developed and validated by members of the VASCERN Psychology Transversal Working Group, made up of experts from across Europe. Drawing on their experience in rare multisystemic vascular diseases, they have produced a toolkit that can be used in both clinical and educational settings.
It aims to strengthen communication within the rare disease community and promote a culture of empathy and partnership between professionals and patients. The toolkit can be used by hospitals, training programmes, and anyone looking to improve patient-centred communication in rare disease care.