Putting Patients First: Shaping a Brighter Future for Rare Diseases

Hosted by MEP Billy Kelleher (Renew, IE) 

Defined as affecting less than 1 in 2,000 people, rare diseases impact the lives of over 30 million people in Europe. Earlier this year, the European Commission proposed a Revision of the 20-year old legislation on medicines for children and rare diseases. Blamed for not being flexible enough to integrate technological advances or develop further R&D towards unmet medical needs, the legislation is to be modified with a new incentives’ systems. Looking back at the success stories of the last 20 years, what measures are best to ease the lives of rare diseases patients for the next 20 years?  

This event will bring together 25-30 stakeholders from EU institution, patient voices and industry, to discuss how to develop the most effective framework to enable treatment of rare diseases. 

Our speakers include:

MEP Billy Kelleher (Renew, IE)
MEP Pernille Weiss (EPP, DK)
Dr Annette Bakker, President of the Children’s Tumor Foundation (CTF) - remotely
Dr Orla Galvin, Executive Director of the European Federation of Neurological Associations (EFNA) - remotely
Ms. Kaja Kantorska, Policy Officer Pharmaceuticals, European Commission
Dr Alexander Natz, Secretary General, European Confederation of Pharmaceutical Entrepreneurs (EUCOPE) 
Dr Anita Hill, MD, PhD, Clinical Development at Alexion, AstraZeneca Rare Disease


Date & time
12th October 2023
European Parliament Member salons, Brussels