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 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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Paloma TEJADA

Paloma Tejada Rare Diseases International Director +41 763 60 47 25
paloma.tejada@eurordis.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 10
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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Anna_Kole

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

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Karolina Hanslik Project Senior Manager - Rare Impact +32 2 274 06 14
karolina.hanslik@eurordis.org

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Annette Dumas

Annette Dumas European Public Affairs Consultant +33 1 56 53 52 10
annette.dumas@eurordis.org

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

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Sandra Courbier

Sandra Courbier Rare Barometer survey programme Senior Manager +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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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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Elisa Ferrer

Elisa Ferrer Patient Engagement Senior Manager +34 932 20 80 39
elisa.ferrer@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 + 34 932 20 44 01
lenja.wiehe@eurordis.org

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Anne-Laure Aslanian Patient Engagement Manager Healthcare – ERN & Healthcare / European Patient Advocacy Groups +34 93 220 48 60
anne-laure.aslanian@eurordis.org

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Matteo Scarabelli

Maria Cavaller Patient Engagement Junior Manager +34 932 20 47 62
maria.cavaller@eurordis.org

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Virginie Bros

Virginie Bros-Facer Scientific Director +33 1 56 53 52 13
virginie.bros-facer@eurordis.org

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Gulcin Gumus

Gulcin Gumus Research and Policy Project Manager +34 93 220 48 60
gulcin.gumus@eurordis.org

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Raquel Castro

Raquel Castro Open Academy Director, Social Policy Director +34 932 20 32 24
raquel.castro@eurordis.org

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Aline Schnieder

Aline Schnieder Open Academy Junior Manager +34 931 84 58 67
aline.schnieder@eurordis.org

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Denis COSTELLO

Denis Costello Patient Engagement in Digital Technologies Senior Manager & Rare Connect Leader +34 932 20 34 78
denis.costello@eurordis.org

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Marta Campabadal

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

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Sandra Pavlovic

Sandra Pavlovic RareConnect Outreach Manager +381 6 66 67 27 03
sandra.pavlovic@eurordis.org

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Communications & Development

Lara Chappell

Lara Chappell Communications Director, Head of Communications & Development +33 1 56 53 52 60
lara.chappell@eurordis.org

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Brian Howard

Brian Howard Development Relations Senior Manager
brian.howard@eurordis.org

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Céline Schwob

Céline Schwob Corporate Relations 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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Sharon Ashton

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

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

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Eva Bearryman Communications Manager +33 1 56 53 52 61
eva.bearryman@eurordis.org

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Lucy Michaeloudis

Lucy Michaeloudis Communications Junior Manager +33 1 56 53 52 69
lucy.michaeloudis@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 14
patrice.regnier@eurordis.org

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Susan Foster

Susan Foster Administrative 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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corina.jpg

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

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Die Stimme der Menschen mit seltenen Krankheiten in EuropaEURORDIS Die internationale Stimme für Menschen mit seltenen KrankheitenRare Disease International Ein moderiertes mehrsprachiges Forum, das Patienten, Familien und Experten zum Erfahrungsaustausch zusammenführt. RareConnect Das Rare Barometer Programm ist eine EURORDIS-Initiative, die Umfragen durchführt und die Erfahrungen von Patienten mit seltenen Erkrankungen in Fakten und Zahlen umwandelt, die wiederum Entscheidungsträgern vermittelt werden können.Rare Barometer Eine internationale Aufklärungskampagne, die jedes Jahr am letzten Tag im Februar stattfindet. Der Tag der Seltenen Erkrankungen ist eine EURORDIS-InitiativeRare Disease Day Nehmen Sie am größten Zusammentreffen von Interessenvertretern für seltene Krankheiten in Europa teil und besuchen Sie die zweijährliche Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD). ECRD ist eine EURORDIS-InitiativeEuropean Conference on Rare Diseases