Gabriella Almberg | Head of Policy and Public Affairs, Rare Diseases
UCB

Day 2 - Thursday 24 October @ 09:00

Keynote Panel: The Rare Disease Action Plan – where are we and how to integrate this from a European to a national level for real impact?

-What have we learnt from the last presidencies – how does the future of rare diseases look with Belgium and now Hungary’s leadership?

-How is each country executing their national action plan and are they involving their local policy makers?

Moderator: Alexandra Heumber Perry, Chief Executive Officer, Rare Diseases International

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Alexandra Heumber Perry / Keynote Panel: The Rare Disease Action Plan – where are we and how to integrate this from a European to a national level for real impact?

Alexandra Heumber Perry, Chief Executive Officer,
Rare Diseases International

Alexandra Heumber Perry is the Chief Executive Officer of Rare Diseases International, the global alliance of Persons Living with a Rare Disease. She has dedicated her entire career to contribute improving healthcare policies to benefit people living with diseases, with a particular focus in...

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Flaminia Macchia, Head, Global Rare Disease Policy, Alexion – AstraZeneca Rare Disease

Daniel De Vicente Corbeira, Board Member of FEDER, FEDER

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Daniel De Vicente Corbeira / Keynote Panel: The Rare Disease Action Plan – where are we and how to integrate this from a European to a national level for real impact?

Daniel De Vicente Corbeira, Board Member of FEDER,
FEDER

Degree in Pharmacy. Postgraduate degree in public health. Postgraduate in Management and Strategic Planning for Non-Profit Organisations. President of ASMD SpainBoard member of FEDER (Spanish Federation of Rare Diseases).Board member of Eurordis (Rare Diseases Europe).After working for more than 20 ...

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Avril Daly, President, Eurordis - Rare Diseases Europe

Gabriella Almberg, Head of Policy and Public Affairs, Rare Diseases, UCB

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Gabriella Almberg / Keynote Panel: The Rare Disease Action Plan – where are we and how to integrate this from a European to a national level for real impact?

Gabriella Almberg, Head of Policy and Public Affairs, Rare Diseases,
UCB

Gabriella Almberg is a Director, Global Policy Lead at UCB. She has worked at UCB since January 2021. She is a member of the multi-stakeholder Together4RD Steering Group. Previous roles include working at Novo Nordisk as Associate Policy Director, and almost 7 years at the trade...

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Fabienne Bartoli, Inspector General, French National Authority for Health

Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies, Sanofi

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Anne-Sophie Chalandon / Keynote Panel: The Rare Disease Action Plan – where are we and how to integrate this from a European to a national level for real impact?

Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies,
Sanofi

Anne-Sophie Chalandon works to further enhance Sanofi’s external engagement and policy shaping efforts with rare disease community. She brought a solid experience and demonstrated successes in patient advocacy and policy shaping in the rare disease space. Anne-Sophie is a major in genetic and...

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Day 2 - Thursday 24 October @ 14:40

Public-Private Partnerships to accelerate development and boost innovation in Rare Diseases

the evolving landscape of European health policy, this high-level panel brings together key stakeholders to address a critical yet often overlooked issue: the urgent need to enhance collaboration between European Reference Networks (ERNs) and industry in rare disease research. With a new EU leadership, this discussion comes at a pivotal moment to shape the future of rare disease policy and research prioritization.

Despite progress, 95% of rare diseases still lack effective treatments, highlighting the imperative for innovative partnerships. This panel will explore how to overcome regulatory, funding, and capacity barriers that hinder optimal ERN-industry collaborations. By bringing together voices from patient advocacy, clinical research, policy, and industry, we aim to forge a path towards a more collaborative and efficient rare disease research ecosystem in Europe.

Key topics include:

• Leveraging public-private partnerships to accelerate innovation
• Proposals for a "sandbox" framework to facilitate agile collaborations
• Enhancing patient involvement in shaping research priorities
• Addressing funding challenges through novel mechanisms

  As we anticipate the Hungarian Presidency's focus on rare diseases and look ahead to the Polish and Danish Presidencies, this panel will generate actionable insights to inform policy recommendations. Our goal is to catalyze momentum for an EU Rare Disease Action Plan that embraces the power of ERN-industry collaborations.

Moderator: Victor Maertens, Government Affairs Manager, European Confederation of Pharmaceutical Entrepreneurs

Matteo Scarabelli, Market Access, Associated Director, EFPIA - European Federation of Pharmaceutical Industries and Associations

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Matteo Scarabelli / Public-Private Partnerships to accelerate development and boost innovation in Rare Diseases

Matteo Scarabelli, Market Access, Associated Director,
EFPIA - European Federation of Pharmaceutical Industries and Associations

After a Phd in Philosophy and a first experience in a competitiveness-focus Brussels think tank, Matteo Scarabelli joined Eurordis - the European Organisation of rare disease patients - to be responsible for the involvement of patients in research and decision making for orphan drugs. For two years ...

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Avril Daly, President, Eurordis - Rare Diseases Europe

Gabriella Almberg, Head of Policy and Public Affairs, Rare Diseases, UCB

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Gabriella Almberg / Public-Private Partnerships to accelerate development and boost innovation in Rare Diseases

Gabriella Almberg, Head of Policy and Public Affairs, Rare Diseases,
UCB

Gabriella Almberg is a Director, Global Policy Lead at UCB. She has worked at UCB since January 2021. She is a member of the multi-stakeholder Together4RD Steering Group. Previous roles include working at Novo Nordisk as Associate Policy Director, and almost 7 years at the trade...

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Sheela Upadhyaya, Life Science Advisor in Rare Diseases & Special Advisor, Openflex Ltd

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Sheela Upadhyaya / Public-Private Partnerships to accelerate development and boost innovation in Rare Diseases

Sheela Upadhyaya, Life Science Advisor in Rare Diseases & Special Advisor,
Openflex Ltd

Sheela Upadhyaya is a Life Sciences Consulant and a renowed expert in rare disease with over 25 year experience in the healthcare industry.  She has broad international experience spanning, UK including Scotland and the EU5 with a record of delivering leading edge innovation for rare diseases. ...

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Rima Nabbout, MD/PhD, Hopital Necker- Enfants Malades