Ireland & the European Health Union: What will it mean for rare diseases?

The second instalment of the IIEA’s Ireland and the European Health Union discussion series, supported by Janssen Sciences Ireland, features contributions by expert speakers who will discuss the role that the EU can play in improving care for patients with rare diseases in Ireland and across the EU. Many of the 6,000 to 8,000 different rare diseases are life threatening and are often lacking in accurate diagnosis and, oftentimes, only limited treatment options exist. Meanwhile, major inequalities in standards of care and outcomes for people with rare diseases prevail across Europe. As part of its new Health Union, the EU has identified rare diseases as a health priority and is pursuing a number of initiatives that are designed to improve care and access to medicines across the EU, and regarding drug and treatment development, genetic testing and diagnosis, data sharing, and research activities. At this event, speakers discuss what these developments could mean for national healthcare in Ireland and across the EU and consider how Ireland compares to European peers in the care of rare diseases. Speakers also reflect on what the future may hold for rare diseases, including the potential impact of the upcoming EU package of pharma legislation as well as other expected policy developments. Our guest speakers include:   Billy Kelleher, MEP Vicky McGrath, CEO at Rare Diseases Ireland Prof. Sean Gaine, Consultant Respiratory Physician at the Mater Misericordiae University Hospital Jennifer Lee, Therapy Area Market Access Leader at Janssen