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Bridging the gaps between health, social and local services to improve care
of people living with rare and complex conditions
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Workshop on Advancing Holistic and Innovative Care for Rare Diseases and Complex Conditions – Posters

Poster Session at NoRo Resource Centre

  • Innovative policies in Croatia – Social Welfare System Services, Anica Jeciz Ministry for Demography, Family, Youth and Social Policy, Croatia
  • Integrated care and rare diseases in the Region of Murcia, Beatriz Martinez-Lozano, Region of Murcia, Spain
  • TCC Rare Diseases personalized accompaniment by a concerned specialist, Christine de Kalbermatten, ProRaris
  • Pilot Reference Centre for Rare Diseases, Dorica Dan, NoRo Resource Centre
  • Collaboration for the management of Rare Diseases ColaboRARE, Dorica Dan, Florina Breban, Zsuzsa Almasi, NoRo Resource Centre/RONARD
  • Romanian Actions on Rare Diseases at a glance, Emilia Severin, Carol Davila University of Medicine and Pharmacy, Bucharest, Dorica Dan, NoRo Resource Centre
  • Protocol on Attention to students suffering from Rare Diseases, Estrella Mayoral Rivero, FEDER
  • Ågrenska National Centre for Rare Diseases, Gunilla Jaeger, Ågrenska
  • A pilot of a support group program designed for siblings of children with a rare disease or disability in Finland, Helena Käriääinen, National Institute for Health and Welfare Helsinki
  • Self-reported Education, Work and Health Status among 53 Norwegian Men with SCA, Lisen Julie Mohr, Frambu
  • CREER Resource Centre for Rare Diseases, Marta Fonfria, CREER
  • Rare Disabilities Unit, Mirja Heikkilä, Finnish Association for People with Physical Disabilities
  • National Strategy “A barrier-free society for people with disabilities”, Monica Solomie, Ministry of Work, Family, Social Protection and Elderly, Romania
  • INNOVCare, Lucia Monica Avram, Sebastian Ardelean, Salaj County Council
  • The Veneto Regional Register for Rare Diseases and Coordinating Center, Silvia Manea, Veneto Regional Register for Rare Diseases and Coordinating Center
  • Rare News from Norway 2017, Stein Are Aksnes, Norwegian National Advisory Unit on Rare Disorders
  • Centrum rovázení, Centre of guiding, Veronika Himlová, Ministry of Labour and Social Affairs Czech Republic
  • Debra Resource Centre for Epidermolysis Bullose, Vlasta Zmazek, Debra Croatia

 

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This project is co-funded by
the European Union
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