WHY ATTEND

 

27-29 October 2025
RAI Congress Center, Amsterdam

 

 

Premium Conference

Learn from world KOLs in rare diseases on the latest in diagnosis, AI, NBS, gene therapy, clinical trials and patient access. Ensure that you are equipped with the most recent policy and governmental changes in OMP legislation and EUHTA.

 

Busy Exhibition 

With a footfall of 2000+ attendees, exhibitors will get to speak directly to their target market, expand sales leads, strengthen and establish their brand and close deals with customers on-site.

 

 

Limitless Networking

Get access to our dedicated event app (3 weeks before the event), see all of our 2000+ attendees and set up 1-2-1 meetings to maximise your ROI in attending the congress.

 

 

Start-up & Biotech Zone

Meet start-ups or pitch your company at the leading rare disease congress. Meet new companies that can help your business or investors that can take you to the next level.

Workshops 

Host or participate in our pre-congress workshops where we deep dive into topics including AI, early access, patient journey, RD action plan and EU joint clinical assessment with all stakeholders.

Working Groups 

Be part of a NEW format – our working groups. Replacing roundtables, these sessions are intimate discussions and one of the best ways to find out what your target audience wants.

Patient Zone

Our patient zone provides you with the unique opportunity to engage with Patient Advocacy Groups and ERNs who are at the heart of the rare disease community.

 

Media Zone 

The media zone will be bustling with all of the biggest names in the rare disease world. Witness live interviews and use our zone to announce press releases and social media outreach to maximise your presence.

Amsterdam

We’re moving to Amsterdam! The heart of where the EMA, RIVM and ZIN are, as well as some of the strongest ERN networks and biotech hubs. Join us at our newest venue for a state of the art experience.

 

Super Early Bird Tickets - Save €1,800
Offer Ends 18 July

Join 2,000 attendees at the world's largest orphan drug and rare disease event.

This is your best opportunity in 2025 to network with professionals in the rare disease industry.

 

250+ Speakers | Subject Matter Experts

 

  • Nadiah Hanim Abdul Latif at World Orphan Drug Congress 2025
    Nadiah Hanim Abdul Latif
    President
    Malaysian Rare Disorders Society
    OMAR ALI at World Orphan Drug Congress 2025
    OMAR ALI
    FORMER ADVISER NICE / HEAD OF PAYERS
    VERPORA
  • Gabriella Almberg at World Orphan Drug Congress 2025
    Gabriella Almberg
    Head of Health System Policy & Public Affairs
    UCB
    Derek Ansel at World Orphan Drug Congress 2025
    Derek Ansel
    Vice President, Therapeutic Strategy Lead, Rare Disease
    Worldwide Clinical Trials
  • Fabienne Bartoli at World Orphan Drug Congress 2025
    Fabienne Bartoli
    Inspector General
    French National Authority for Health
    Gareth Baynam at World Orphan Drug Congress 2025
    Gareth Baynam
    Clinical Geneticist
    Australian National University
  • Debra Bellon at World Orphan Drug Congress 2025
    Debra Bellon
    Strategic Engagement Manager
    Rare Diseases International
    Stefano Benvenuti at World Orphan Drug Congress 2025
    Stefano Benvenuti
    Head of Public Affairs and Market Access
    Fondazione Telethon
  • Corinne Blanchet at World Orphan Drug Congress 2025
    Corinne Blanchet
    Executive Director, Program Delivery
    Premier Research
    LARA BLOOM at World Orphan Drug Congress 2025
    LARA BLOOM
    President and CEO
    The Ehlers-Danlos Society
  • Thomas Bols at World Orphan Drug Congress 2025
    Thomas Bols
    Head of Government Affairs and Patient Advocacy, EMEA & APAC
    PTC Therapeutics
    Matt Bolz-Johnson at World Orphan Drug Congress 2025
    Matt Bolz-Johnson
    Mental Health Lead & Healthcare Advisor
    EURORDIS
  • James Bonham at World Orphan Drug Congress 2025
    James Bonham
    President
    International Society for Neonatal Screening
    P.J. Brooks at World Orphan Drug Congress 2025
    P.J. Brooks
    Deputy Director, Division of Rare Diseases Research Innovation
    NIH/NCATS
  • Maria Cavaller Bellaubi at World Orphan Drug Congress 2025
    Maria Cavaller Bellaubi
    Patient Engagement and Therapeutic Development Director
    EURORDIS
    Anne-Sophie Chalandon at World Orphan Drug Congress 2025
    Anne-Sophie Chalandon
    Head of Global Public Affairs, Rare Diseases and CGT Policies
    Sanofi
  • William Cole at World Orphan Drug Congress 2025
    William Cole
    Life Science Partnership Manager
    Kidney Research UK
    Elizabeth De Lange at World Orphan Drug Congress 2025
    Elizabeth De Lange
    Professor in Predictive Pharmacology
    Leiden Amsterdam Center for Drug Research LACDR
  • Toon Digneffe at World Orphan Drug Congress 2025
    Toon Digneffe
    Head, Public Affairs & Public Policy, Europe & Canada
    Takeda
    João Duarte at World Orphan Drug Congress 2025
    João Duarte
    Vice President, Head of Global Regulatory Affairs Excellence
    IPSEN
  • Pauline Evers at World Orphan Drug Congress 2025
    Pauline Evers
    Former NFK and Patient & Innovative therapies advoacate
    NFK
    Elise Evers at World Orphan Drug Congress 2025
    Elise Evers
    Senior Consultant
    Initiate
  • Pedro Franco at World Orphan Drug Congress 2025
    Pedro Franco
    Head of Europe Global Regulatory and Scientific Policy
    Merck
    Thom Frielink at World Orphan Drug Congress 2025
    Thom Frielink
    Associate
    Curie Capital BV
  • Almenia Garvey at World Orphan Drug Congress 2025
    Almenia Garvey
    Sr. Director Global Feasibility/Site Engagement
    Allucent
    Diego Fernando Gil Cardozo at World Orphan Drug Congress 2025
    Diego Fernando Gil Cardozo
    President
    Enfermedades Raras en el Caribe y América Latina (ERCAL)
  • Sonia Gobeil at World Orphan Drug Congress 2025
    Sonia Gobeil
    Cofounder
    Ataxia of Charlevoix-Saguenay Foundation
    Josie Godfrey at World Orphan Drug Congress 2025
    Josie Godfrey
    Director
    JG Zebra Consulting
  • Wim Goettsch at World Orphan Drug Congress 2025
    Wim Goettsch
    Special Advisor HTA & Professor for HTA of Pharmaceuticals
    Zorginstituut
    Alicia Granados at World Orphan Drug Congress 2025
    Alicia Granados
    Head, Global Rare Diseases Medical Scientific Advocacy
    Sanofi
  • Marcus Guardian at World Orphan Drug Congress 2025
    Marcus Guardian
    CEO
    International Horizon Scanning Initative
    Niklas Hedberg at World Orphan Drug Congress 2025
    Niklas Hedberg
    Head Of Pharmacy
    Tandvards och Lakemedelsformansverket
  • Patrick Hopkinson at World Orphan Drug Congress 2025
    Patrick Hopkinson
    Managing Director
    'International HTA Expert
    Julian Isla at World Orphan Drug Congress 2025
    Julian Isla
    Director
    Foundation 29
  • Mohit Jain at World Orphan Drug Congress 2025
    Mohit Jain
    Vice President, Market Access, International Operations
    IntraBio
    Anneliene Jonker at World Orphan Drug Congress 2025
    Anneliene Jonker
    Rare Disease Therapy Researcher
    University of Twente
  • Ron Jortner at World Orphan Drug Congress 2025
    Ron Jortner
    Founder & CEO
    Aspire Biosciences
    Daria Julkowska at World Orphan Drug Congress 2025
    Daria Julkowska
    Scientific Coordination, European RD Research Alliance
    IRDiRC
  • Nina Knight at World Orphan Drug Congress 2025
    Nina Knight
    Development & Operations Officer
    Aspire Biosciences
    Jonathan Kornstein at World Orphan Drug Congress 2025
    Jonathan Kornstein
    VP, Rare Disease & Pediatrics Clinical Development
    Caidya
  • Stelios Kympouropoulos at World Orphan Drug Congress 2025
    Stelios Kympouropoulos
    MEP
    European Parliament
    Christina Kyriakopoulou at World Orphan Drug Congress 2025
    Christina Kyriakopoulou
    Senior Expert - Policy Officer Health Research
    European commission
  • Yann Le Cam at World Orphan Drug Congress 2025
    Yann Le Cam
    Founder & Past-CEO of EURORDIS-Rare Disease Europe
    EURORDIS-Rare Diseases Europe
    Tim Leest at World Orphan Drug Congress 2025
    Tim Leest
    Clinical Assessor Efficacy and Safety & Chair of COMP EMA
    F.A.M.H.P
  • MI LIU at World Orphan Drug Congress 2025
    MI LIU
    Professor
    Soochow University
    Veronica Lopez Gousset at World Orphan Drug Congress 2025
    Veronica Lopez Gousset
    Independent Consultant
    VLG Consulting
  • Karen Malone at World Orphan Drug Congress 2025
    Karen Malone
    CEO
    GeneScape
    Aurora Mateos at World Orphan Drug Congress 2025
    Aurora Mateos
    Founder & Director
    Menkes International Association
  • Jan Mol at World Orphan Drug Congress 2025
    Jan Mol
    Patient Advocate
    Hematon
    Juliet Moritz at World Orphan Drug Congress 2025
    Juliet Moritz
    Senior VP Strategic Solutions and Patient Centricity
    Ergomed
  • Alexander Natz at World Orphan Drug Congress 2025
    Alexander Natz
    Secretary General
    EUCOPE - European Confederation of Pharmaceutical Entrepreneurs
    Jonathan Neal at World Orphan Drug Congress 2025
    Jonathan Neal
    Head of Central, South and Eastern Europe Takeda and EFPIA European Markets Committee
    Takeda
  • Daniel O'Connor at World Orphan Drug Congress 2025
    Daniel O'Connor
    Director, Regulatory Policy & Early Access
    ABPI
    Nneka Onwudiwe at World Orphan Drug Congress 2025
    Nneka Onwudiwe
    Former PRO/PE Regulatory Review Officer
    Food and Drug Administration (FDA)
  • Rachel Paiva Petean Abu Taleb at World Orphan Drug Congress 2025
    Rachel Paiva Petean Abu Taleb
    Medical Monitor
    Veristat
    Francesc Palau at World Orphan Drug Congress 2025
    Francesc Palau
    Distinguished Investigator
    SJD Barcelona Children's Hospital
  • Samantha Parker at World Orphan Drug Congress 2025
    Samantha Parker
    Patient Advocacy and Communication Lead Rare Diseases
    Italfarmaco
    Bhavesh Patel at World Orphan Drug Congress 2025
    Bhavesh Patel
    Principal
    CRA, Charles River Associates
  • David Pearce at World Orphan Drug Congress 2025
    David Pearce
    Chair, International Rare Disease Research Consortium (IRDiRC)
    Sanford Health
    Enrico Piccinini at World Orphan Drug Congress 2025
    Enrico Piccinini
    Senior Vice President, EU & International, Rare Diseases
    Chiesi Group
  • Stefano Portolano at World Orphan Drug Congress 2025
    Stefano Portolano
    CEO
    Azafaros
    Shawn Ritchie at World Orphan Drug Congress 2025
    Shawn Ritchie
    Chief Executive Officer
    Med-Life Discoveries
  • Georgia Roberts at World Orphan Drug Congress 2025
    Georgia Roberts
    Senior Consultant HTA
    Initiate
    Christopher Rudolf at World Orphan Drug Congress 2025
    Christopher Rudolf
    Founder and Chief Executive Officer
    Volv Global
  • Adrien Samson at World Orphan Drug Congress 2025
    Adrien Samson
    Healthcare policy senior manager
    EuropaBio
    Jörg Schüttrumpf at World Orphan Drug Congress 2025
    Jörg Schüttrumpf
    Chief Scientific Innovation Officer
    Grifols
  • Claire Skentelbery at World Orphan Drug Congress 2025
    Claire Skentelbery
    Director General
    EuropaBio
    Tara Smith at World Orphan Drug Congress 2025
    Tara Smith
    Exec VP, Innovative Therapies
    Med-Life Discoveries
  • Rachel Smith at World Orphan Drug Congress 2025
    Rachel Smith
    Executive Director, Global Head of Rare Disease, CoE
    Parexel
    Violeta Stoyanova-Beninska at World Orphan Drug Congress 2025
    Violeta Stoyanova-Beninska
    Senior Scientific Specialist at Human Division EMA, Chair of Regulatory Science Committee, IRDiRC
    EMA
  • Kwee Lan Tan at World Orphan Drug Congress 2025
    Kwee Lan Tan
    Head of Team Regional Regulatory Lead
    Boehringer Ingelheim
    Ana Tediosi at World Orphan Drug Congress 2025
    Ana Tediosi
    Head of Expanded Access Program Strategy
    WEP Clinical
  • Sven Tops at World Orphan Drug Congress 2025
    Sven Tops
    Chief Market Access Officer
    Kintiga
    Sheela Upadhyaya at World Orphan Drug Congress 2025
    Sheela Upadhyaya
    Life Science Advisor in Rare Diseases & Special Advisor
    Openflex Ltd
  • Bart van Montfort at World Orphan Drug Congress 2025
    Bart van Montfort
    Scientific Director Biologics & Scientific Leader Gene Therapy
    Johnson and Johnson
    Anne Willemsen at World Orphan Drug Congress 2025
    Anne Willemsen
    Co-chair JCA Subgroup
    Zorginstituut Nederland
  • Durhane Wong-Rieger at World Orphan Drug Congress 2025
    Durhane Wong-Rieger
    President, Chief Executive Officer
    Canadian Organisation for Rare Disorder & Rare Diseases International
    Martine Zimmermann at World Orphan Drug Congress 2025
    Martine Zimmermann
    Senior Vice President, Head of Global Regulatory Affairs
    IPSEN
  • Giulia Pierini at World Orphan Drug Congress 2025
    Giulia Pierini
    Partner, Strategic Patient Engagement & Advocacy
    Alira Health
    Sebastian Honoré at World Orphan Drug Congress 2025
    Sebastian Honoré
    Cure Lowe Foundation
  • Victor Maertens at World Orphan Drug Congress 2025
    Victor Maertens
    Government Affairs Director
    European Confederation of Pharmaceutical Entrepreneurs (Belgium)
    Aisling McMahon at World Orphan Drug Congress 2025
    Aisling McMahon
    Kidney Research UK
  • Warnyta Minnaard at World Orphan Drug Congress 2025
    Warnyta Minnaard
    Patient advocate
    Missie Tumor Onbekend
    Paolo Morgese at World Orphan Drug Congress 2025
    Paolo Morgese
    Vice President, Public Affairs, Europe
    Alliance for Regenerative Medicine
  • Frauke Naumann-Winter at World Orphan Drug Congress 2025
    Frauke Naumann-Winter
    Head of Unit
    BfArM
    James Oakley at World Orphan Drug Congress 2025
    James Oakley
    CEO
    Keep Me Breathing
  • Paula Orandash at World Orphan Drug Congress 2025
    Paula Orandash
    Director, Patient Engagement
    Ergomed
    Carlos Pinoargote at World Orphan Drug Congress 2025
    Carlos Pinoargote
    Chief Operating Officer
    BRCR Global
  • Trevor Smith at World Orphan Drug Congress 2025
    Trevor Smith
    VP Preclinical R&D
    Inovio Pharmaceuticals
    Annette Bakker at World Orphan Drug Congress 2025
    Annette Bakker
    CEO
    Childrens Tumor Foundation
  • Mark Battaglini at World Orphan Drug Congress 2025
    Mark Battaglini
    Chief Strategy Officer
    Alliance for Regenerative Medicine
    Karen Facey at World Orphan Drug Congress 2025
    Karen Facey
    Senior Research Fellow
    University of Edinburgh
  • Dieter Schultewolter at World Orphan Drug Congress 2025
    Dieter Schultewolter
    Head of Global Medical Affairs Neuroscience
    Teva Pharmaceuticals
    Leon van Wouwe at World Orphan Drug Congress 2025
    Leon van Wouwe
    Clinical Innovation Director
    Volv Global
  • Chris Grimes-Crompton at World Orphan Drug Congress 2025
    Chris Grimes-Crompton
    Principal Consultant
    DECISIVE CONSULTING LTD
    Kent Rogers at World Orphan Drug Congress 2025
    Kent Rogers
    CEO
    EveryONE Medicines

 

Sponsors & Exhibitors | Leading Solution Providers

 

  • Gold Sponsor

    Chiesi Global Rare Diseases at World Orphan Drug Congress 2025

    Gold Sponsor

    Eversana at World Orphan Drug Congress 2025
  • Gold Sponsor

    IPSEN at World Orphan Drug Congress 2025

    Gold Sponsor

    Parexel at World Orphan Drug Congress 2025
  • Gold Sponsor

    PrimeVigilance at World Orphan Drug Congress 2025

    Gold Sponsor

    Takeda at World Orphan Drug Congress 2025
  • Gold Sponsor

    Volv Global at World Orphan Drug Congress 2025

    Gold Sponsor

    Worldwide Clinical Trials at World Orphan Drug Congress 2025
  • Silver Sponsor

    Allucent at World Orphan Drug Congress 2025

    Silver Sponsor

    Initiate Consultancy at World Orphan Drug Congress 2025
  • Silver Sponsor

    Premier Research at World Orphan Drug Congress 2025

    Silver Sponsor

    WEP Clinical at World Orphan Drug Congress 2025
  • Bronze Sponsor

    Alira Health at World Orphan Drug Congress 2025

    Bronze Sponsor

    BRCR Global at World Orphan Drug Congress 2025
  • Bronze Sponsor

    Costello Medical Consulting Ltd at World Orphan Drug Congress 2025

    Bronze Sponsor

    GeneScape at World Orphan Drug Congress 2025
  • Bronze Sponsor

    Kintiga at World Orphan Drug Congress 2025

    Associate

    Azafaros at World Orphan Drug Congress 2025
  • Associate

    EveryONE Medicines at World Orphan Drug Congress 2025

    Exhibitor

    IDEA Regulatory at World Orphan Drug Congress 2025
  • Exhibitor

    Medscape Education Global at World Orphan Drug Congress 2025

    Exhibitor

    Aixial inc at World Orphan Drug Congress 2025
  • Exhibitor

    Ataxia of Charlevoix-Saguenay Foundation at World Orphan Drug Congress 2025

    Exhibitor

    BAP Pharma at World Orphan Drug Congress 2025
  • Exhibitor & Supporting Partner

    Dravet Syndrome Foundation at World Orphan Drug Congress 2025

    Exhibitor

    Envoya Inc. at World Orphan Drug Congress 2025
  • Exhibitor & Supporting Partner

    ERN SKIN at World Orphan Drug Congress 2025

    Exhibitor

    FH EUROPE FOUNDATION at World Orphan Drug Congress 2025
  • Exhibitor

    GNH Pharmaceuticals USA at World Orphan Drug Congress 2025

    Exhibitor & Supporting Partner

    Inserm at World Orphan Drug Congress 2025
  • Exhibitor & Supporting Partner

    IRDiRC at World Orphan Drug Congress 2025

    Exhibitor & Supporting Partner

    Kidney Research UK at World Orphan Drug Congress 2025
  • Exhibitor

    Onyx Scientific at World Orphan Drug Congress 2025

    Exhibitor

    OPEN Health at World Orphan Drug Congress 2025
  • Exhibitor

    QuickSTAT A Kuehne + Nagel Company at World Orphan Drug Congress 2025

    Exhibitor & Supporting Partner

    RARE Revolution at World Orphan Drug Congress 2025
  • Startup

    Azur Health Science at World Orphan Drug Congress 2025

    Startup

    Ksilink at World Orphan Drug Congress 2025
  • Startup

    NeuroCores, Inc. at World Orphan Drug Congress 2025

    Startup

    Netabolics at World Orphan Drug Congress 2025
  • Startup

    Unboxed Psychology at World Orphan Drug Congress 2025

 

Get involved at World Orphan Drug Congress Europe 2025

 

 

TO SPONSOR


Steph Scanlon

Steph.Scanlon@terrapinn.com

 

TO SPEAK


Abdu Kauroo
Abdu.Kauroo@terrapinn.com

 

MARKETING & PRESS


Jasper Cameron

Jasper.Cameron@terrapinn.com

 

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