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Home » About Us » Our Work » Rare Diseases » Rare Disease Forum

About the Rare Disease Forum

The Rare Disease Forum (RDF) was a collaborative Patient and Public Involvement (PPI) initiative for the 32 counties of Ireland. Its primary aim was to address the pressing health and social care needs of individuals living with rare diseases in Ireland. The RDF Steering Group comprised Rare Diseases Ireland, the Northern Ireland Rare Disease Partnership, Rare Ireland, Health Research Charities Ireland, and the Irish Platform for Patient Organisations, Science and Industry and two contributors with lived experience of rare disease.

The RDF served as a platform for inclusive discussions, informative events, and meaningful progress in tackling the significant challenges faced by individuals with rare diseases. Meetings were open to people living with rare diseases, caregivers, patient organizations, as well as key stakeholders, including healthcare professionals, researchers, industry representatives, funders, policymakers, politicians, and anyone with an interest in rare diseases. The events primarily focused on overarching topics, and in most cases did not specifically address individual rare diseases.

Link to Irish Government websiteLink to Pobal websiteLink to Health Research Board website