to care and on European cooperation EESC public hearing Ensuring strong European solidarity for rare disease patients Prof Dr Ildiko Horvath ID: 1044463
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1. Perspective on access to care and on European cooperationEESC public hearing:Ensuring strong European solidarity for rare disease patientsProf. Dr. Ildiko HorvathFormer secretary of state for healthNational Koranyi Institute for PulmonologyBudapest, Hungary
2. Life expectancy has improved for allbut with major differencesHealthy peoplePatients with cystic fibrosishttp://mindigcsakelore.blogspot.com/2017/http://www.cfmedicine.com/history/fifties.htmNow it is time to move forward
3. Pillars of care for rare diseases in the HungaryEuropean Union Council Recommendation on an action in the field of rare diseases 2009.EESC opinion: European action – rare diseases 2009. Rapporteur: Ágnes Cser (Workers – GR II/Hungary)Hungarian National plan and Strategy for rare disease 2104-2020 (Orv. Hetil., 2014, 155(9), 325–328.)Strong collaboration of decision makers-medical, educationalprofessionals-patients, patient organisations – civil society representativesTraditionally very active network of patient organisations
4. Health care pillarsStrong political commitment to make wide access to life-changers for rare patientsNew, off-label drugs financed in the frame of compassionate use by the reimbursement systemStrong network of rare disease centres (regional at the universities and National Institutes) Good background from genetic laboratoriesParticipation in the European Reference NetworkNational patient registries Research and innovation support
5. European Collaboration potentialsFostering more EU-wide research collaborationStrengthen clinical trial networksSupport Clinical Centre CollaborationsEnsure equity for countries (CEE)Build on digital health solutionsMonitor progress
6. Have a vision of healthy aging alsofor those with rare disease