Friday, October 23, 2020

Monday, 25 September 2017 NEW Hotel, Athens

Securing patients’ access to vital therapeutic solutions for rare, life-threatening, chronic and genetic diseases

The workshop has been initiated by a group of industry representatives in addition to leading Greek and pan-European patient groups, healthcare professionals and health advocacy organizations who have recently joined forces in order to address a number of challenges being faced by patients with rare diseases in Greece. The event is implemented by Boussias Conferences and is initiated, funded and supported by: EUCOPE (European Confederation of Pharmaceutical Entrepreneurs), PESPA (Greek Alliance of Rare Diseases), PPTA (Plasma Protein Therapeutics Association), S.S.R.D.O.D (Scientific Society for Rare Diseases & Orphan Drugs), TSA (Tuberous Sclerosis Association of Greece), CSL Behring, Genesis Pharma , Novo Nordisk, Pharmathen , Sanofi Genzyme, Shire, VIANEX.

The aim of the workshop is to promote a constructive dialogue with stakeholders and entities involved. During the workshop, the current landscape of rare disease in Greece will be examined, in particular the key challenges posed by the hospital clawback mechanism, introduced in 2015.

Whilst there are between 6,000 and 8,000 known rare diseases, just 1% have EU approved medicines. Orphan drugs are the only therapeutic solution for the medical needs of the patients with rare diseases, affecting less than 5 in 10,000 people.

Plasma protein therapies/ blood derivative products are unique, biologic medicines of human origin that are either infused or injected to treat a variety of rare, life-threatening, chronic and genetic diseases. These products are irreplaceable, are not interchangeable and have a very specific cost structure for production. Several EU countries already have specific measures in place to protect access to these therapies.

For certain categories of products, such as orphan drugs (ODs) and plasma protein therapies (PPTs) / blood derivative products (BDPs) it is argued that the hospital clawback strongly impacts access to life-saving therapies for people suffering from rare, life-threatening, chronic and genetic diseases. Ensuring sustainable access to these products is of the utmost importance for Greek patients, whose lives depend on access to these vital treatments.

By bringing together Greek and EU policymakers, representatives from international organisations, pharma industry leaders, healthcare professionals, patients and academia, the workshop will provide an opportunity for all interested stakeholders to review the current environment of rare diseases in Greece and discuss effective and sustainable solutions to secure patient access to these life-saving therapies.

Key Issues to be discussed

  1. Rare Diseases: Current Landscape in Europe and in Greece, Effects on Patient Access
  2. Setting Reimbursement Strategies in a Challenging Landscape
  3. Creating a Sustainable Environment for Rare Diseases Patients

Who should attend

  • Government representatives
  • Academics
  • Pharmaceutical industry executives
  • Market access professionals
  • Health economists
  • Researchers
  • Physicians
  • Patients

Confirmed Speakers & Moderators

  • Antonis Avgerinos, Secretary General of the Scientific Society for Rare Diseases & Orphan Drugs (EESPOF), President of the Hellenic Red Cross
  • Anastasia Balasopoulou, General Manager Hippokrateio Hospital, ΜSc in Decision Making, Operational Research Department, London School of Economics
  • Didier Cochet, General Manager, Sanofi-Genzyme
  • Christos Dakas, Vice President, Pharma Innovation Forum, CEO Shire Greece
  • Panayiotis Georgakopoulos, Vice President of the National Organization for the Provision of Healthcare Services (EOPYY)
  • Ilias Gountas, Scientific Associate, Doctoral Candidate, Laboratory of Hygiene, Epidemiology and Medical Statistics, Medical School - University of Athens
  • Marianna Konstantinidi, General Manager, CSL Behring
  • Isidoros Kougioumtzoglou, Market Access Manager, Vianex, Member of the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE)
  • Marianna Lambrou, Founder & ex-President of the Greek Alliance for Rare Diseases, President of the Tuberous Sclerosis Association of Greece
  • Despoina Makridaki, A’ Vice President National Organization of Medicines (EOF), President of the Pan-Hellenic Association of Hospital Pharmacists (PEFNI)
  • Konstantinos Panagoulias, General Manager, Vian, Vice-President, Vianex
  • Dimitris Pantazis, CEO of the Institute of Pharmaceutical Research and Technology (IFET)
  • Olympios Papadimitriou, General Manager, Novo Nordisk Hellas LTD
  • Bruno Santoni, Executive Director, Plasma Protein Therapeutics Association (PPTA) Europe
  • Panagiotis Stafylas, CEO, ΗΤΑ & eHealth Consultant, Healthink LP
  • Aikaterini Theoharis, President, Panhellenic Association of Patients & Friends suffering from Lysosomal Diseases "The Solidarity"
  • Athanassios Vozikis, Assistant Professor, Director of the Laboratory of Health Economics and Management, Economics Dept., School of Economics, Business and International Studies, University of Piraeus

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