Alexandra Heumber Perry | Chief Executive Officer
Rare Diseases International

Pre-Congress Workshops - Tuesday 22nd October @ 14:00

WORKSHOP: The Rare Disease Action Plan – How will we implement this? [OFFSITE]

Rare diseases pose unique challenges to healthcare systems worldwide due to their low prevalence and complex treatment requirements. Traditional financing mechanisms often fail to adequately address the needs of patients with rare diseases, leading to disparities in access to treatment and care. Last June, RDI (Rare Diseases International) launched a campaign for a World Health Assembly (WHA) Resolution on Rare Diseases in 2025. RDI is launching a campaign for a World Health Assembly (WHA) Resolution on Rare Diseases in 2025.

Overall objective of the session if to discuss the different articulations needed between the several stratifications of plans, national, regional and global:

-              To identify the interconnections needed

-              To ensure efficiency of the system

-              To avoid fragmentation of strategy and actions

-              To identify the appropriate use of the resources

The session should be an active interactive session between the panelists experts and the participants.

Global, Regional, National plans – How will we implement this?

14:00 – 14:10PM - Opening Remarks from Workshop Leader – Anne-Sophie Chalandon Sanofi

14:10 – 15:10 PM - Testimony and open discussion with the floor - capture the perspective of each participant. 

15:10 – 16:30PM Q&A and closing remarks

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

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Anne-Sophie Chalandon / WORKSHOP: The Rare Disease Action Plan – How will we implement this? [OFFSITE]

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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Ulrike Schwerdfeger, Legal Technical Officer, WHO

Alexandra Heumber Perry, Chief Executive Officer, Rare Diseases International

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Alexandra Heumber Perry / WORKSHOP: The Rare Disease Action Plan – How will we implement this? [OFFSITE]

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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Fabienne Bartoli, Inspector General, French National Authority for Health

Session led by:

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Anne-Sophie Chalandon / WORKSHOP: The Rare Disease Action Plan – How will we implement this? [OFFSITE]

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 @ 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...

CloseMore