Mr Adrien Ruez
EURORDIS - Rare Diseases Europe
Operations Junior Manager
Mrs Estelle Ruffier
Vaincre la Mucoviscidose
Volunteer
Miss Lucia Ruggieri
Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
Researcher
Mr Miguel Angel Ruiz Carabias
Asociación De Enfermedades Raras Dgenes
MANAGING DIRECTOR AND PSYCHOLOGIST
Mr. Sven Rütz
BfArM (Federal Institute for Drugs and medical Devices)
Health Care Manager
Mr Andrzej Rys
EC DG SANTE
Director of Health systems, Medical products and Innovation
Ms Kati Saari
Finnish Network for Rare Diseases
Coordinator
Ms Emma Safar
Amryt Pharma
Patient Advocacy and Government Affairs Intern
Dr Elmira Safarova
MedMediator
CEO
Mr Salman Saif
CureforU
Founder CureforU
Dr Agnes Saint-Raymond
NA
NA
Mrs Inês Sala
Centro Hospitalar Universitário do Porto / ICBAS
Dr.
Mme Françoise Salama
AFM Telethon
administratrice
Ms Anastasiia Saliuk
EURORDIS- Rare Diseases Europe
Senior Project Manager
Mr Allan Sam
European Parliament
Policy Advisor
Herr Sebastiano Sambasile
Deutsche GBS Selbsthilfe
Bundesvorstand Deutsche GBS Selbsthilfe e.V
Mrs Rosa Sánchez de Vega
Aniridia Europe
Board member
Mr Arnaud Sandrin
Banque Nationale de Données Maladies Rares – BNDMR (AP-HP)
Operational director
Mrs Guillebaud Sandrine
IPSEN
Global Brand Lead Palovarotene
Mr. Matti Santalahti
Association of Cancer Patients in Finland
Patient Advocate
