• Frances Fitzgerald

Webinar Registration: Rare Diseases in Ireland & the EU – Finding Innovative Solutions for All

Updated: Mar 21

Friday 1st April, 10:00-11:30 (GMT)


I am delighted to invite you to my next online event on ‘Rare Diseases in Ireland & the EUFinding Innovative Solutions for All’.


This online event will take place on Friday 1st April from 10:00-11:30 GMT (11:00-12:30 CET) in conjunction with the European Parliament Liaison Office in Ireland.


I will chair the discussion, and will be joined by the following distinguished panel of speakers:

  • 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

This webinar will provide speakers and those in attendance the space to have a solutions-focused discussion on the opportunities and challenges in the rare diseases landscape in Ireland and the EU.


Speakers will also explore 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.


This event is being held following the inclusion of a commitment in the EU Commission work programme for 2022 to revise legislation on medicines for children and rare diseases. MEPs also called on the Commission to present an EU action plan on rare diseases in November 2021.


Prior registration for this event is essential and we kindly ask that you do so via this LINK. Participants can comment and ask questions via a live chat.


Please feel free to share this invite with friends, colleagues and your networks - I look forward to welcoming you to the webinar on Friday April 1st at 10:00.


Warm Regards,


Frances Fitzgerald MEP

Vice-Chair of the EPP Group

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