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Staff

The 40+ members of the EURORDIS team work across three offices in Paris, Brussels and Barcelona. They represent more than 10 nationalities and speak more than 15 languages.

We all share the vision of EURORDIS to enable better lives and cures for people living with a rare diseases.

Governance, Membership & European and International Advocacy

Yann Le Cam Chief Executive Officer
yann.lecam@eurordis.org
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Marie Meunier Senior Executive Assistant to the Chief Executive Officer
marie.meunier@eurordis.org
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Flaminia Macchia Rare Diseases International Executive Director
flaminia.macchia@rarediseasesint.org
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Anja Helm Senior Manager of Relations with Patient Organisations
anja.helm@eurordis.org
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Valentina Bottarelli Public Affairs Director & Head of European and International Advocacy
valentina.bottarelli@eurordis.org
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Simone Boselli Public Affairs Director
simone.boselli@eurordis.org
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Ariane Weinman Public Affairs Senior Manager
ariane.weinman@eurordis.org
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Anna Kole Public Health Policy Director - Rare2030 Project Lead
anna.kole@eurordis.org
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Julien Delaye Public Health Policy Junior Manager
julien.delaye@eurordis.org
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Katarzyna Radwan Team Assistant & Office Manager
katarzyna.radwan@eurordis.org
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Operations

Michael Wilbur Chief Operating Officer
michael.wilbur@eurordis.org
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Adrien Ruez Operations Junior Manager
adrien.ruez@eurordis.org
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François Houÿez Information & Access to Therapies Director & Health Policy Advisor
francois.houyez@eurordis.org
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Virginie Hivert Therapeutic Development Director
virginie.hivert@eurordis.org
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Roseline Favresse Research Policy and Initiatives Director
roseline.favresse@eurordis.org
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Inés Hernando ERN and Healthcare Director
ines.hernando@eurordis.org
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Matt Bolz-Johnson ERN & Healthcare Advisor
matt.bolz-johnson@eurordis.org
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Matteo Scarabelli Patient Engagement Manager - HTA
matteo.scarabelli@eurordis.org
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Lenja Wiehe Patient Engagement Senior Manager Healthcare – ERN & Healthcare / European Patient Advocacy Groups
lenja.wiehe@eurordis.org
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Rita Francisco Patient Engagement Junior Manager for the Healthcare - ERN
rita.francisco@eurordis.org
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María Cavaller Patient Engagement Senior Manager
maria.cavaller@eurordis.org
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Edith Sky Gross Health and Social Science Senior Project Manager
edith.gross@eurordis.org
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Gulcin Gumus Research and Policy Project Manager
 gulcin.gumus@eurordis.org
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Tamara Kovazh Open Academy Manager - Training Coordinator
tamara.kovazh@eurordis.org
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Marta Campabadal Open Academy Manager
marta.campabadal@eurordis.org
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Sandra Pavlovic RareConnect Outreach Manager
sandra.pavlovic@eurordis.org
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Sandra Courbier Social Research Director - Rare Barometer Programme Lead
sandra.courbier@eurordis.org
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Jessie Dubief Rare Barometer Research Executive
jessie.dubief@eurordis.org
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Erwan Berjonneau Research Executive for the Rare Barometer Programme
erwan.berjonneau@eurordis.org
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Finance & Support Services

Patrice Régnier Chief Financial Officer
patrice.regnier@eurordis.org
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Susan Foster HR Support and Budget Manager
susan.foster@eurordis.org
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Imane Elgoumri Compliance and Budget Manager
imane.elgoumri@eurordis.org
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Annie Rahajarizafy Accounting Manager
annie.rahajarizafy@eurordis.org
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Corina Puls Office Manager
corina.puls@eurordis.org
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