Over 410,000 people across the island of Ireland are affected by rare diseases—and around 70% of these are children and young people. These young individuals face unique developmental and health challenges due to the rarity and complexity of their conditions, which often makes it difficult for healthcare systems to meet their needs effectively. As a result, many individuals are left without the necessary support to manage their health and navigate complex care pathways.
This workshop addresses that gap by developing sustainable, inclusive, and practical self-management solutions to help adolescents and young adults (AYAs) better understand their health, navigate the healthcare system, and advocate for their holistic health and social care needs. This initiative tackles a significant public health issue by empowering young people to take a more active role in shaping their care. To support this, a special training event titled “Voices Rarely Heard: Empowering Young People Living with Rare Diseases- From Lived Experience to Leadership” will take place in Dublin during Rare Disease Month, February 2025. Organised by the All-Ireland Rare Disease Interdisciplinary Network, the event invites young people with lived experience of rare diseases to become active contributors to health research and innovation.
The training will help participants learn how treatments and medicines are developed, how research works, and how their voices can influence decisions that affect their care. It will also focus on building practical skills in self-care, communication, and managing long-term conditions. By supporting their confidence, knowledge, and advocacy, this training helps ensure that young people are not only heard—but are leaders in improving rare disease care for the future.
