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Workshop 7 - "Brainstorming & Policy Development session: Prevention"

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EURORDIS - Rare Diseases Europe
EURORDIS - Rare Diseases Europe

Workshop 7 - "Brainstorming & Policy Development session: Prevention" "NoRo - updating" Dorica Dan

Health & MedicineEducation
1 of 35
NoRo - updating Bucharest www.apwromania.ro ; www.bolirareromania.ro ; http://anbraro.wordpress.com/anbraro/ Dorica Dan – president RPWA/ RONARD BoD EURORDIS & IPWSO
Topics to be addressed ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Romanian Prader Willi Association - RPWA ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Short history ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Name of Conference – Date - City
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Norwegiano – Romanian partnership for progress in rare diseases - Noro ,[object Object],[object Object],[object Object],[object Object],[object Object]
[object Object],[object Object],[object Object],[object Object],We are part of the Health Care System, not outsiders
Norwegian Romanian (NoRo) Partnership for progress in RD ,[object Object],[object Object],[object Object],[object Object]
NoRo ,[object Object],[object Object],[object Object],[object Object]
The way it works
Services created ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
New services ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Name of Conference – Date - City
List of the training courses Name of Conference – Date - City Goal : 5 eLearning courses Rezullts: 6 accredited courses + 1 under accreditation + extra module Asistent personal al persoanei cu handicap grav (cod COR 513304) Animator socio-educativ (Cod COR: 511307) Pedagog de recuperare (Cod COR: 333003) Lucrător prin arte combinate (cod COR 513905) Evaluator de competențe profesionale (cod COR 241219) Managementul în boli rare CURS GRATUIT: Metode și tehnici de integrare a persoanelor cu dizabilită ți Under evaluation : Personal professional assistant ( COR 513304 )
Accreditation ,[object Object],[object Object],[object Object],[object Object],[object Object]
Resources ,[object Object],[object Object],[object Object],[object Object],[object Object]
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Services for patients ,[object Object],[object Object],[object Object],[object Object],[object Object]
Day care centre ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Beneficiaries ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Training for patients / Respite care ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Beneficiaries ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Trial for flight ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Beneficiaries ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Activities development ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
În ce măsură calitatea vieții depinde de fizioterapie? LIFE QUALITY ASSESMENT Frequency Percent Valid in foarte mare masura adevarat 49 8.2 in mare masura adevarat 164 27.4 moderat 145 24.2 in mica masura adevarat 87 14.5 deloc adevarat 118 19.7 Total 563 94.0 Missing NS/NR 33 5.5 System 3 .5 Total 36 6.0 Total 599 100.0
În ce măsură sănătatea mea depinde de kinetoterapie? Frequency Percent Cumulative Percent Valid in foarte mare masura adevarat 53 18,2 18,6 in mare masura adevarat 73 25,1 44,2 moderat 43 14,8 59,3 in mica masura adevarat 21 7,2 66,7 deloc adevarat 93 32,0 99,3 NS/NR 2 ,7 100,0 Total 285 97,9 Missing System 6 2,1 Total 291 100,0
Cât de satisfăcut sunteți de suportul primit de la familie? Frequency Percent Valid in foarte mare masura 279 46.6 in mare masura 251 41.9 moderat 37 6.2 in mica masura 10 1.7 deloc 10 1.7 Total 587 98.0 Missing NS/NR 2 .3 System 10 1.7 Total 12 2.0 Total 599 100.0
Cât de satisfăcut sunteți de calitatea serviciilor de îngrijire a sănătății? Frequency Percent Valid in foarte mare masura 14 2.3 in mare masura 95 15.9 moderat 323 53.9 in mica masura 85 14.2 deloc 60 10.0 Total 577 96.3 Missing NS/NR 9 1.5 System 13 2.2 Total 22 3.7 Total 599 100.0
Results to be achieved ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Rezults ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Potential budget reallocations ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Name of Conference – Date - City
Other opportunities created ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Name of Conference – Date - City
Thank you!!!!!!! Name of Conference – Date - City

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Workshop 7 - "Brainstorming & Policy Development session: Prevention"

  • 1. NoRo - updating Bucharest www.apwromania.ro ; www.bolirareromania.ro ; http://anbraro.wordpress.com/anbraro/ Dorica Dan – president RPWA/ RONARD BoD EURORDIS & IPWSO
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  • 11. The way it works
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  • 14. List of the training courses Name of Conference – Date - City Goal : 5 eLearning courses Rezullts: 6 accredited courses + 1 under accreditation + extra module Asistent personal al persoanei cu handicap grav (cod COR 513304) Animator socio-educativ (Cod COR: 511307) Pedagog de recuperare (Cod COR: 333003) Lucrător prin arte combinate (cod COR 513905) Evaluator de competențe profesionale (cod COR 241219) Managementul în boli rare CURS GRATUIT: Metode și tehnici de integrare a persoanelor cu dizabilită ți Under evaluation : Personal professional assistant ( COR 513304 )
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  • 27. În ce măsură calitatea vieții depinde de fizioterapie? LIFE QUALITY ASSESMENT Frequency Percent Valid in foarte mare masura adevarat 49 8.2 in mare masura adevarat 164 27.4 moderat 145 24.2 in mica masura adevarat 87 14.5 deloc adevarat 118 19.7 Total 563 94.0 Missing NS/NR 33 5.5 System 3 .5 Total 36 6.0 Total 599 100.0
  • 28. În ce măsură sănătatea mea depinde de kinetoterapie? Frequency Percent Cumulative Percent Valid in foarte mare masura adevarat 53 18,2 18,6 in mare masura adevarat 73 25,1 44,2 moderat 43 14,8 59,3 in mica masura adevarat 21 7,2 66,7 deloc adevarat 93 32,0 99,3 NS/NR 2 ,7 100,0 Total 285 97,9 Missing System 6 2,1 Total 291 100,0
  • 29. Cât de satisfăcut sunteți de suportul primit de la familie? Frequency Percent Valid in foarte mare masura 279 46.6 in mare masura 251 41.9 moderat 37 6.2 in mica masura 10 1.7 deloc 10 1.7 Total 587 98.0 Missing NS/NR 2 .3 System 10 1.7 Total 12 2.0 Total 599 100.0
  • 30. Cât de satisfăcut sunteți de calitatea serviciilor de îngrijire a sănătății? Frequency Percent Valid in foarte mare masura 14 2.3 in mare masura 95 15.9 moderat 323 53.9 in mica masura 85 14.2 deloc 60 10.0 Total 577 96.3 Missing NS/NR 9 1.5 System 13 2.2 Total 22 3.7 Total 599 100.0
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  • 35. Thank you!!!!!!! Name of Conference – Date - City