Governance, Membership & European and International Advocacy

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Yann Le Cam Chief Executive Officer +33 1 56 53 52 11
yann.lecam@eurordis.org

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Marie Meunier

Marie Meunier Senior Executive Assistant to the Chief Executive Officer +33 1 56 53 52 11
marie.meunier@eurordis.org

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Marine Hurard Governance Manager +33 (0)7 89 07 72 45
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

Anja Helm Senior Manager of Relations with Patient Organisations +33 1 56 53 52 17
anja.helm@eurordis.org

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Valentina Bottarelli Public Affairs Director & Head of European and International Advocacy +32 2 882 77 22
valentina.bottarelli@eurordis.org

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Simone Boselli

Simone Boselli Public Affairs Director +32 2 882 77 23
simone.boselli@eurordis.org

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Simone Boselli

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

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Ariane Weinmann

Ariane Weinman Public Affairs Senior Manager +33 1 56 53 52 65
ariane.weinman@eurordis.org

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Anna_Kole

Anna Kole Public Health Policy Director - Rare2030 Project Lead +33 6 14 93 36 00
anna.kole@eurordis.org

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Anna_Kole

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

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Katarzyna Radwan Team Assistant & Office Manager +32 2 274 06 15
katarzyna.radwan@eurordis.org

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Operations

Michael WILBUR

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

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François Houÿez Information & Access to Therapies Director & Health Policy Advisor +33 1 56 53 52 18
francois.houyez@eurordis.org

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Virginie Hivert Therapeutic Development Director +33 1 56 53 52 19
virginie.hivert@eurordis.org

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Simone Boselli

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

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Inés Hernan

Inés Hernando ERN and Healthcare Director +32 2 274 06 11
ines.hernando@eurordis.org

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Matt Johnson

Matt Bolz-Johnson ERN & Healthcare Advisor +49 1729 388 387
matt.bolz-johnson@eurordis.org

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Matteo Scarabelli

Matteo Scarabelli Patient Engagement Manager - HTA +33 1 56 53 13 64
matteo.scarabelli@eurordis.org

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Lenja Wiehe

Lenja Wiehe Patient Engagement Senior Manager Healthcare – ERN & Healthcare / European Patient Advocacy Groups +34 936 06 84 67
lenja.wiehe@eurordis.org

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Simone Boselli

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

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Matteo Scarabelli

Maria Cavaller Patient Engagement Manager +34 936 06 84 64
maria.cavaller@eurordis.org

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Edith Gross Health and Social Science Senior Project Manager +33 7 53 72 92 88
edith.gross@eurordis.org

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Gulcin Gumus

Gulcin Gumus Research and Policy Project Manager +34 936 06 84 62
gulcin.gumus@eurordis.org

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Zoe Alahouzou

Tamara Kovazh Open Academy Manager - Training Coordinator +34 936 06 96 24
tamara.kovazh@eurordis.org

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Marta Campabadal

Marta Campabadal Open Academy Manager +34 932 20 32 59
marta.campabadal@eurordis.org

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Veronica Popa Digital Patient Engagement Manager +40 726 126 480
veronica.popa@eurordis.org

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Sandra Pavlovic

Sandra Pavlovic RareConnect Outreach Manager +381 65 24 63 925
sandra.pavlovic@eurordis.org

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Sandra Courbier

Sandra Courbier Social Research Director - Rare Barometer Programme Lead +33 1 56 53 52 63
sandra.courbier@eurordis.org

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Jessie Dubief Rare Barometer Research Executive +33 6 81 35 81 41
jessie.dubief@eurordis.org

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Communications & Development

Lara Chappell

Lara Chappell Strategic Communications and Marketing Director, Head of Awareness, Public Engagement and Events +33 1 56 53 52 60
lara.chappell@eurordis.org

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Sharon Ashton

Sharon Ashton Open Academy & Events Director +44 7713 035014
sharon.ashton@eurordis.org

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Brian Howard

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

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Martina Bergna Events Manager +33 1 56 53 52 66
martina.bergna@eurordis.org

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Céline Schwob

Céline Schwob Corporate Relations Senior Manager +33 1 56 53 52 16
celine.schwob@eurordis.org

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Anne-Mary Bodin Resource Development Assistant +33 1 56 53 52 64
anne-mary.bodin@eurordis.org

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Céline Schwob

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

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Stanislav Ostapenko Communications Manager +33 1 56 53 52 61
stanislav.ostapenko@eurordis.org

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Lise Pernin Communications Junior Manager +33 1 56 53 52 10
lise.pernin@eurordis.org

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Davor Duboka Web Technology Manager +33 1 56 53 52 10
davor.duboka@eurordis.org

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Finance & Support Services

Patrice Regnier

Patrice Régnier Chief Financial Officer +33 1 56 53 52 10
patrice.regnier@eurordis.org

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Susan Foster

Susan Foster HR Support and Budget Manager +33 1 56 53 13 63
susan.foster@eurordis.org

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Annie Rahajarizafy

Annie Rahajarizafy Accounting Manager +33 1 56 53 13 65
annie.rahajarizafy@eurordis.org

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

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Corina Puls Office Manager +33 01 56 53 52 10
corina.puls@eurordis.org

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases