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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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Marine Hurard Governance Senior Manager - EU Operating Grant Lead
marine.hurard@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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Raquel Castro Social Policy and Initiatives Director
raquel.castro@eurordis.org
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Julie Pernet European Public Affairs Senior Manager
julie.pernet@eurordis.org
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Ariane Weinman Public Affairs Senior Manager
ariane.weinman@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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François Houÿez Information & Access to Therapies Director & Health Policy Advisor
francois.houyez@eurordis.org
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Julien Delaye Patient Engagement Manager - HTA
julien.delaye@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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Jelena Malinina Patient Data Director
jelena.malinina@eurordis.org
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Matt Bolz-Johnson ERN & Healthcare Advisor
matt.bolz-johnson@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 - ERN & Healthcare
rita.francisco@eurordis.org
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María Cavaller Bellaubi Patient Engagement & Therapeutic Development Senior Manager
maria.cavaller@eurordis.org
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Claudia Fuchs Drug Repurposing Projects Senior Manager
claudia.fuchs@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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Marta Campabadal Open Academy Manager
marta.campabadal@eurordis.org
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Rachel Butcher Open Academy Training Manager
rachel.butcher@eurordis.org
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Veronica Popa Digital Patient Engagement Manager
veronica.popa@eurordis.org
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Sandra Pavlovic RareConnect Outreach Manager
sandra.pavlovic@eurordis.org
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Anastasiia Saliuk Senior Project Manager, Ukraine Response
anastasiia.saliuk@eurordis.org
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Jessie Dubief Rare Barometer Programme Senior Manager
jessie.dubief@eurordis.org
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Andrea Osvoll Communications Manager - Projects & Programmes
andrea.osvoll@eurordis.org
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Sharon Ashton Open Academy & Events Director
sharon.ashton@eurordis.org
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Brian Howard Head of Philanthropy & Partnerships
brian.howard@eurordis.org
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Martina Bergna Events Manager
martina.bergna@eurordis.org
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Anne L’Heveder Events Junior Manager
anne.lheveder@eurordis.org
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Céline Schwob Corporate Relations Director
celine.schwob@eurordis.org
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Anne-Mary Bodin Resource Development Assistant
anne-mary.bodin@eurordis.org
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Jo Marshall Corporate and Donor Relations Assistant
jo.marshall@eurordis.org
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Stanislav Ostapenko Communications Senior Manager
stanislav.ostapenko@eurordis.org
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Julien Poulain Communications Manager
julien.poulain@eurordis.org
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Rhiannon Walls Communications Junior Manager
rhiannon.walls@eurordis.org
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Estelle Dubois-Vignal Rare Disease Day Senior Manager
estelle.dubois@eurordis.org
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Lise Pernin Communications Junior Manager - Rare Disease Day
lise.pernin@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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