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Insights into rare disease research. Research and Information Subgroup National Steering Group on a Rare Disease Plan for Ireland. Rare diseases. Less than 5 per 10,000 European popn. Lifetime prevalence 6-8% (EURORDIS) Point prevalence 2-3% (Orphanet) At least 50% children
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Insights into rare disease research Research and Information Subgroup National Steering Group on a Rare Disease Plan for Ireland
Rare diseases • Less than 5 per 10,000 European popn. • Lifetime prevalence 6-8% (EURORDIS) • Point prevalence 2-3% (Orphanet) • At least 50% children • 30% of children with rare disease dying before their 5th birthday
Scope • Information – definition, coding, epidemiology • Research – basic, clinical, translational Clinicians - Better diagnostics, better treatments and improvements in symptom management and disease progression Patients and families - Limitation of disability, better quality of life, life expectancy
Purpose • Opportunities and challenges facing rare disease research and researchers in Ireland • Ways of supporting the development of rare disease research in the future • Priority areas– funding, facilities, networks, international collaboration, infrastructure, leadership, training and expertise
