This webinar on ‘Rare Diseases in Ireland & the EU – Finding Innovative Solutions for All’ was held on Friday April 1st 2022 in conjunction with the European Parliament Liaison Office in Ireland.
Guest speakers included:
Florian Schmidt – Deputy head of Unit, Pharmaceutical Unit, DG SANTE, European Commission
Pádraig O’Sullivan TD – Sponsoring the Health (Pricing and Supply of Medical Goods) (Amendment) Bill 2021
Rachel Finnegan – Senior Director of Government Affairs EMEA at BioMarin
Derick Mitchell – CEO IPPOSI (The Irish Platform for Patient Organisations, Science and Industry)
Bernadette Gilroy – Patient Advocate and Chairperson of PKU Association of Ireland
I chaired the event where speakers held a solutions-focused discussion on the opportunities and challenges in the rare diseases landscape in Ireland and the EU.
Speakers also explored how the ongoing revision of the EU Orphan and Paediatric Medicines Regulations can improve patient access to rare disease therapies and determine related policy and engagement priorities for Ireland.