Day 1
Final Agenda
Time: Central European Time (CET)
| 09.20 – 09.30 | Hopin Platform Introduction & Conference Etiquette |
| 09.30 – 10.30 | WELCOME ADDRESSES |
| Conference Moderators: | Dimitrios ATHANASIOU, EMA Pediatric Committee, EPF, WDO, EAE Board Member Vasilis KARATZIAS, President, Hellenic Friedreich’s Ataxia Association, Director of the Office of Legal Advisers, NATO Rapid Deployable Corps, Greece |
| Speakers: | Dimitris PAPADIMOULIS, Vice President, European Parliament |
| Thanos PLEVRIS, Minister of Health, Hellenic Ministry of Health | |
| Nathalie MOLL, Director General, European Federation of Pharmaceutical Industries and Associations (EFPIA) | |
| Yann LE CAM, Chief Executive Officer, EURORDIS-Rare Diseases Europe | |
| Mary ADAMOPOULOU, President “95” Rare Alliance Greece | |
| 10.30 – 11.30 | SESSION 1 | BUILDING A SUSTAINABLE HEALTHCARE SYSTEM BASED ON EQUITY, EQUALITY AND PATIENT RIGHTS |
| Reducing inequality within and among countries by focusing on equity for PLWRD, we wish to showcase best practices of how existing inequalities faced by our community have been reduced. | |
| Moderator: | Yann LE CAM, Chief Executive Officer, EURORDIS-Rare Diseases Europe |
| Panel Discussion: | European Parliament Perspective Stelios KYMPOUROPOULOS, Psychiatrist, Member of the European Parliament |
| European Commission Perspective Andrzej Jan RYS, Director for Health systems, medical products and innovation responsible for Directorate B in DG SANTE, European Commission |
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| Androulla ELEFTHERIOU, Executive Director, Thalassaemia International Federation (TIF) | |
| European Perspective Alba ALCONCHEA DIAZ, Member of the BoD, EURORDIS, CEO of FEDER |
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| Discussion – Q&A | |
| 11.30 – 13.00 | SESSION 2 | EUROPEAN vs NATIONAL RD ACTION PLANS |
| The Action Plan represents the first and most comprehensive step towards reforming health care systems across the EU with all the required steps, deliverables, and measurable goals to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world. | |
| Moderator and Intro: | Europe’s Action Plan for Rare Diseases: An innovative, future-proof and holistic policy framework for rare diseases proposed by EURORDIS Anna KOLE, Public Health Policy Director – Rare2030 Project Lead, EURORDIS-Rare Diseases Europe |
| Panel Discussion: | Antoni MONTSERRAT MOLINER, Vice President of the Luxembourg National Committee for Rare Diseases, Member of the Board of ALAN-Maladies Rares Luxembourg, Member of the Scientific Committee of FEDER Spain, Active Senior on Public Health for the European Commission |
| Prof. Milan MACEK, MD, DSc, Head of the National center for Cystic Fibrosis, Prague, Board Member of the European Society of Human Genetics (ESHG), National Coordinator of Orphanet, Active Member of Eurogentest | |
| Prof. Birute TUMIENE, Associate Professor at Vilnius University, Faculty of Medicine, Head of Unit, Center for Medical Genetics, Vilnius University Hospital Santaros Clinics, National Coordinator, Orphanet International, Panel of Experts Member, WHO Collaborative Global Network for Rare Diseases, Diagnostics Scientific Committee Member, International Rare Diseases Research Consortium (IRDiRC) | |
| Christina KYRIAKOPOULOU, PhD Senior Policy officer- Research Programmes, Rare Diseases, Health Data, Artificial intelligence, in-silico tools People Directorate, Health Innovations and Ecosystems unit, DG Research and Innovation, European Commission | |
| Discussion – Q&A | |
| 13:00 – 13.30 | Expo – Networking Break |
| 13.30 – 15.00 | SESSION 3 | ADVANCING POLICY DISCUSSION ON PREVENTION AND NEWBORN SCREENING AS PILLARS OF PUBLIC HEALTH |
| A harmonised approach to Prevention and Newborn Screening across Europe is one of the key asks of the Rare Disease Patient Community. Policy and Science need to catch up with the community needs and the citizen’s ‘right to know’. | |
| Moderator: | Elizabeth VROOM, Member of the Board of Directors EURORDIS-Rare Diseases Europe, Chair of World Duchenne Organization |
| Keynote Speech: | JUST A CHAMPION: The Italian model Simona BELLAGAMBI, Member of the Board of Directors EURORDIS-Rare Diseases Europe, UNIAMO, Member of the Council of National Alliances |
| Panel Discussion: | Screen4Care NBS IMI Project Nicolas GARNIER, Senior Director, Patient Advocacy Lead, Global Product Development, Pfizer Rare Disease |
| NBS Pilot Austria Vassiliki KONSTANTOPOULOU, Inborn Errors of Metabolism, Department of Pediatrics and Adolescent Medicine, Medical University Vienna, Newborn screening and Laboratory for metabolic disorders |
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| The Slovenian experience Urh GROSELJ, MD, PhD, MA, Asst. Prof. of Paediatrics, Medical Faculty, University Medical Centre, University Children’s Hospital, Ljubljana, Slovenia, Member of Republic of Slovenia National Medical Ethics Committee, Visiting Scholar, Stanford University School of Medicine |
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| Discussion – Q&A | |
| 15.00 – 15.30 | Expo – Networking Break |
| 15.30 – 16.30 | SESSION 4 | DATA WEALTH IN RARE DISEASES |
| Health Data is an asset. In Rare Diseases the value of data is even higher. Currently, technology and policy appear to be merging. In the session, we will discuss how we can collect and share data by strengthening national and international collaboration and coordination, while respecting its protection and privacy. | |
| Moderator: | Daria JULKOWSKA, EJP RD Coordinator, Assistant Director, Thematic Institute of Genetics, Genomics & Bioinformatics, INSERM, France |
| Panel Discussion: | DARWIN EU (Data Analytics and Real World Interrogation Network) Alexandra PACURARIU, Scientific Administrator, Data Analytics and Methods Task Force, European Medicines Agency (EMA) |
| RD-CODE Ana RATH, Coordinator of the Orphanet Work Direct Grant and of the RD-CODE Project |
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| Health Data Space & European Reference Networks Dr. Jose A. VALVERDE, Policy Officer, Unit B.3 – European Reference Networks and Digital Health, DG Health and Food Safety, European Commission |
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| C-PATH Cécile OLLIVIER, OCM Director – Regulatory Science Europe at Critical Path Institute (C-Path) |
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| Designing RWD bottom up from the patients’ perspective Kristof VANFRAECHEM, Founder & CEO, Data for Patients |
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| Discussion – Q&A | |
| 16.30 | END OF DAY 1 |
Contact us
Registrations
Greece: Chrysoula Kordouli, Τ: +30 210 6617777 (ext. 204), +30 6946236795, E: [email protected]
Cyprus: Ioanna Antoniou, Τ: +357 99 494 653, E: [email protected]
Sponsorships
Greece: Chrysoula Kordouli, Τ: +30 210 6617777 (ext. 204), +30 6946236795, E: [email protected]
Cyprus: Giorgos Loizou, Τ: +357 99 103323, E: [email protected]
Info & Content
Natalia Toubanaki, T: +30 210 6617 777 (ext. 289), +306947936708, E: [email protected]
BOUSSIAS
338. Kleisthenous Str. 15344, Gerakas, Attiki, Greece
+30 210 6617777
+30 210 6617778
www.boussias.com
+30 210 6617777
+30 210 6617778
www.boussias.com