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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Zoe Alahouzou

Zoe Alahouzou Deputy to the Chief Executive Officer +33 1 56 53 52 62
zoe.alahouzou@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 2 274 06 14
valentina.bottarelli@eurordis.org

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Simone Boselli

Simone Boselli Public Affairs Director +32 2 274 06 13
simone.boselli@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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Clara Hervás Public Affairs Manager +32 2 274 06 10
clara.hervas@eurordis.org

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Kostas Aligiannis Public Affairs Manager – EU & National Integrated Advocacy
kostas.aligiannis@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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Karolina Hanslik Project Senior Manager - Rare Impact +32 2 274 06 15
karolina.hanslik@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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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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Erwan Berjonneau

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

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Operations

Michael WILBUR

Michael Wilbur Chief Operating Officer +33 1 56 53 52 67
michael.wilbur@eurordis.org

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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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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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Rob Camp

Rob Camp Patient Engagement Senior Manager - CABs +34 600 20 74 55
rob.camp@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 Manager Healthcare – ERN & Healthcare / European Patient Advocacy Groups +34 936 06 84 67
lenja.wiehe@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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Virginie Bros

Virginie Bros-Facer Scientific Director +33 7 68 10 31 62
virginie.bros-facer@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 Patient Engagement Manager - Online Communities, RareConnect Programme Lead +34 932 20 32 59
marta.campabadal@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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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 Events Director +44 7713 035014
sharon.ashton@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

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

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Anastassiya Khvan Communications Junior Manager +33 1 56 53 52​ 69
anastassiya.khvan@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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Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases