EURORDIS 6th Mental Health & Wellbeing Webinar: ‘How to deliver a diagnosis’

The 6th Mental Health & Wellbeing Webinar: ‘How to deliver a diagnosis’ webinar organized by EURORDIS is scheduled for Oct. 23rd 2024 – from 2.00 pm to 3.30 pm CET.
The ERN ReCONNET will be actively involved as our Scientific Coordinator, Dr. Talarico, will be one of the invited speakers.

Registration is free and open.

The diagnosis of a rare disease is a critical milestone for families and individuals affected by rare conditions. It marks the end of a journey of uncertainty and anxiety, but it can quickly be replaced by significant feelings of fear, stress, and guilt.  The way a diagnosis is communicated can have profound effects. When delivered with empathy and clarity, a diagnosis can empower families and individuals to face the challenges that living with a rare condition brings. However, when handled poorly, it can exacerbate emotional distress, impact on our relationships and disrupt our lives. All too frequently too many in the rare disease community experience inadequate communication during diagnosis. The impact of poor communication of a diagnosis can cask a dark shadow across the future healthcare pathway and erode trust in all medical professionals. This webinar aims to explore real cases and best practices for delivering a rare disease diagnosis
effectively, presented by experts from ERNs such as ERN ReCONNET, ERN CRANIO, ERN-EYE, and VASCERN.
Following these presentations, a panel of specialists from various fields will engage in a discussion to highlight identify best practice on how to deliver a diagnosis and ensure individuals and their caregivers, families can access the psychosocial support they need.

Preliminary agenda can be seen here:
6th Mental wellbeing webinar – Agenda