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 Read more

Marie Meunier Senior Executive Assistant to the Chief Executive Officer
marie.meunier@eurordis.org Read more

Marine Hurard Governance Manager
marine.hurard@eurordis.org Read more

Flaminia Macchia Rare Diseases International Executive Director
flaminia.macchia@rarediseasesint.org Read more

Anja Helm Senior Manager of Relations with Patient Organisations
anja.helm@eurordis.org Read more

Valentina Bottarelli Public Affairs Director & Head of European and International Advocacy
valentina.bottarelli@eurordis.org Read more

Simone Boselli Public Affairs Director
simone.boselli@eurordis.org Read more

Julie Pernet European Public Affairs Senior Manager
julie.pernet@eurordis.org Read more

Ariane Weinman Public Affairs Senior Manager
ariane.weinman@eurordis.org Read more

Anna Kole Public Health Policy Director - Rare2030 Project Lead
anna.kole@eurordis.org Read more

Julien Delaye Public Health Policy Junior Manager
julien.delaye@eurordis.org Read more

Katarzyna Radwan Team Assistant & Office Manager
katarzyna.radwan@eurordis.org Read more

Operations

Michael Wilbur Chief Operating Officer
michael.wilbur@eurordis.org Read more

Adrien Ruez Operations Junior Manager
adrien.ruez@eurordis.org Read more

François Houÿez Information & Access to Therapies Director & Health Policy Advisor
francois.houyez@eurordis.org Read more

Virginie Hivert Therapeutic Development Director
virginie.hivert@eurordis.org Read more

Roseline Favresse Research Policy and Initiatives Director
roseline.favresse@eurordis.org Read more

Inés Hernando ERN and Healthcare Director
ines.hernando@eurordis.org Read more

Jelena Malinina Patient Data Director
jelena.malinina@eurordis.org Read more

Matt Bolz-Johnson ERN & Healthcare Advisor
matt.bolz-johnson@eurordis.org Read more

Lenja Wiehe Patient Engagement Senior Manager Healthcare – ERN & Healthcare / European Patient Advocacy Groups
lenja.wiehe@eurordis.org Read more

Rita Francisco Patient Engagement Junior Manager for the Healthcare - ERN
rita.francisco@eurordis.org Read more

María Cavaller Patient Engagement Senior Manager
maria.cavaller@eurordis.org Read more

Edith Sky Gross Health and Social Science Senior Project Manager
edith.gross@eurordis.org Read more

Gulcin Gumus Research and Policy Project Manager
gulcin.gumus@eurordis.org Read more

Tamara Kovazh Open Academy Manager - Training Coordinator
tamara.kovazh@eurordis.org Read more

Marta Campabadal Open Academy Manager
marta.campabadal@eurordis.org Read more

Veronica Popa Digital Patient Engagement Manager
veronica.popa@eurordis.org Read more

Sandra Pavlovic RareConnect Outreach Manager
sandra.pavlovic@eurordis.org Read more

Sandra Courbier Social Research Director - Rare Barometer Programme Lead
sandra.courbier@eurordis.org Read more

Jessie Dubief Rare Barometer Research Executive
jessie.dubief@eurordis.org Read more

Erwan Berjonneau Research Executive for the Rare Barometer Programme
erwan.berjonneau@eurordis.org Read more

Lara Chappell Strategic Communications and Marketing Director, Head of Awareness, Public Engagement and Events
lara.chappell@eurordis.org Read more

Sharon Ashton Open Academy & Events Director
sharon.ashton@eurordis.org Read more

Brian Howard Head of Philanthropy & Partnerships
brian.howard@eurordis.org Read more

Martina Bergna Events Manager
martina.bergna@eurordis.org Read more

Anne L’Heveder Events Junior Manager
anne.lheveder@eurordis.org Read more

Céline Schwob Corporate Relations Senior Manager
celine.schwob@eurordis.org Read more

Anne-Mary Bodin Resource Development Assistant
anne-mary.bodin@eurordis.org Read more

Jo Marshall Corporate and Donor Relations Assistant
jo.marshall@eurordis.org Read more

Stanislav Ostapenko Communications Senior Manager
stanislav.ostapenko@eurordis.org Read more

Lise Pernin Communications Junior Manager
lise.pernin@eurordis.org Read more

Finance & Support Services

Patrice Régnier Chief Financial Officer
patrice.regnier@eurordis.org Read more

Susan Foster HR Support and Budget Manager
susan.foster@eurordis.org Read more

Imane Elgoumri Compliance and Budget Manager
imane.elgoumri@eurordis.org Read more

Annie Rahajarizafy Accounting Manager
annie.rahajarizafy@eurordis.org Read more

Corina Puls Office Manager
corina.puls@eurordis.org Read more