The ERN ITHACA 2024 Patient Workshop is dedicated to strengthening collaboration between healthcare providers and patient advocacy groups to improve support and care for people affected by rare genetic diseases.
This interactive event combines presentations, abstract showcases and in-depth discussions to encourage meaningful engagement among all participants.
It will be held in Bucharest as a one-day workshop on Thursday 12 of December. We are waiting
The workshop will focus on the following key areas:
- Knowledge Sharing and Best Practices – participants will discuss effective strategies on how to engage patient organisations and support rare disease patients, with a focus on high-impact initiatives.
- Understanding the patient journey – these sessions will explore the patient experience from diagnosis to coping with mental health and bereavement, highlighting genetic counselling and effective communication with families and healthcare teams, supported by findings from the Patient Advosory Board survey.
- Building Resilience – 2 breakout sessions that will explore resources and strategies to help patients and families build resilience and cope with emotional challenges.
- Collaborative space for patient-centred care – this workshop aims to create a supportive network within ERN ITHACA to promote patient-centred care across Europe
The ERN ITHACA Patient Workshop will gather over 50 participants and connect patients and clinicians by sharing high-impact projects and successful practices. This unique event highlights innovative initiatives, best practices, and collaborative efforts within the rare disease community. With a special focus on impactful projects, the workshop advances ERN ITHACA’s mission to foster a patient-centered network that addresses the needs of individuals living with rare congenital malformations and intellectual disability syndromes, both diagnosed and undiagnosed.