The ERN ITHACA Patient Workshop is designed to inspire 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.
Program overview:
Part I: Learning From Each Other
– Engaging patient organizations through ERN ITHACA and Rare diseases in Romania: Current state and perspectives.
– Flash talks and joint debate: Sharing experiences and key takeaways.
Part II: The Patient Journey
– Mental health, diagnoses, and genetic counseling.
– Parallel working groups will explore strategies to strengthen family resilience and address the multifaceted aspects of grief
– Summary of findings and closing remarks.
Join us to learn, share, and collaborate to improve the lives of those affected by rare diseases!