Valentina Bottarelli | Head of Policy and Public Affairs
EURORDIS - Rare Diseases Europe
Valentina Bottarelli joined EURORDIS – Rare Diseases Europe in 2007. She is now Head of Policy and Public Affairs and leads the organisation’s policy and advocacy strategy, representing it before the EU institutions and stakeholders. She oversees key cross-cutting files, especially the advocacy for an EU Action Plan for Rare Diseases and the Rare 2030 recommendations. She also coordinates advocacy on diagnosis, research, therapeutic development, healthcare, access and social inclusion. A central part of her role is linking EU-level and national advocacy, working closely with the Council of National Alliances on National Plans. She also builds synergies with international advocacy through Rare Diseases International, the WHO and the UN. Before EURORDIS, Valentina was a senior consultant in public affairs and communications at Fleishman Hillard in Brussels. She also completed a traineeship at the European Commission’s Directorate for External Affairs.
She holds a Master of Arts in European Political and Administrative Studies from the College of Europe in Bruges and a degree cum laude in Political Sciences from LUISS Guido Carli University, Rome. She speaks Italian, French and English, and conversational Spanish.
Appearances:
Day 2 @ 15:00
Closing Keynote Panel: Pushing Boundaries for the future – What’s next for Rare?
- Assessing a policy roadmap towards an EU and Global Action Plan for Rare Diseases (GAPRD)
- How will the WHO UN Resolution impact rare diseases in 2026 and what progress has been made?
-How can regions come together to harmonise, collaborate and put patients’ needs at the forefront of decision making?
-Beyond the WHO Resolution on rare diseases, how important are the other WHO resolutions and UN Resolutions which are relevant to rare diseases?
-Where are we in the process towards a WHO Global Action Plan on Rare Diseases impact awareness, policy and planning of services at the regional and national levels?
-Is the European Union aligned for a European Action Plan for Rare Diseases? Where are we in the process and what can be expected next?
While Europe is losing ground in rare diseases clinical trials and marketing approval, and is under the high pressure of the US Administration’s Most Favored Nation strategy, how the stakeholders community of rare diseases can play the EU agenda for competitiveness and attractiveness and come with game changing initiatives?
How can we bring the European Reference Networks and clinical research closer to support innovative and meaningful therapy development, and improve patients access?
Which boundaries can be pushed from the recently adopted legislations; i.e EU Pharma Legislation, HTA Legislation & Critical Medicines Act
What comes next in the legislative agenda and which boundaries push can we expect? Biotech Act? Clinical Trial Regulation? Cross Border Health Care?
How can Europe play a different society choice giving priority to collaboration – researchers, clinicians, member states, public-private partnership- and put patients’ needs and solidarity at the forefront of decision making?
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