The Oireachtas All Party Group on Rare Diseases is an informal group of TDs and Senators advocating for the improvement of the lives of people living with rare diseases. The group was established in 2023 and is chaired by Deputy John Lahart, with secretarial support from Rare Diseases Ireland.

Through the group we aim to bring together members of the Oireachtas to ensure strong local and national advocacy and action to bring about the much-needed change for people living with rare diseases in Ireland.

Together we can shape input into current and future legislation, integrate rare diseases into all relevant policies at all levels and ensure investment in health and social care services for people living with rare diseases across the country.

By attending meetings of the Oireachtas APG on Rare Diseases you will become a champion for people living with rare diseases. At meetings you will:

• Receive information and insight on the needs of people living with rare diseases in Ireland.
• Connect with people living with rare diseases and their families, patient advocates, healthcare professionals, researchers and industry.
• Share information and ideas with rare disease stakeholders committed to making a difference for people living with rare diseases.
• Become a rare disease champion and mobilise decision-makers to achieve key policy changes improving the lives of people with rare diseases.