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Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
Soc Ro De Scleroza Multipla
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Soc Ro De Scleroza Multipla

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  • 1. Romanian Multiple Sclerosis Society Engineer AURORA BORSAN PRESIDENT OF SSMR CLUJ NAPOCA, the 26th – 27th of June, 2009
  • 2. SSMR GENERAL PRESENTATION  The Romanian Multiple Sclerosis Society is a structure of federative type, having 14 years previous experience in the field of primary social services for people affected by the multiple sclerosis.  It gathers the local organizations from several localities or counties of the country: Alba, Bicaz, Bihor, Bistrita, Botoşani, Bucureşti, Constanţa, Deva, Dolj, Galaţi, Hunedoara, Neamţ, Prahova, Sibiu, Suceava, Timisoara, Vâlcea. .
  • 3. ROMANIAN MULTIPLE SCLEROSIS SOCIETY IS A MEMBER OF THE FOLLOWING INTERNATIONAL ORGANISATIONS:  Multiple Sclerosis International Federation (MSIF)  European Multiple Sclerosis Platform (EMSP) , which is a member of European Patient’s Forum (EPF), European Disability Forum (EDF) and European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS)  The Romanian Multiple Sclerosis Society is already acknowledged within international projects as an equal partner and with a speciality expertise.
  • 4. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY INFORMATION AND COUNSELING SERVICE: is a social service accredited by the Labour and Social Protection Committee from Bihor since 2006. This service is provided to the patients’ through the following tools: Columna Magazine – quarterly issued, distributed freely in a number of 1500 copies to the persons with multiple sclerosis recorded in our data base.
  • 5. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY
  • 6. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY  Web Page – www.smromania.ro  Help Line – 0800800044, is a free phone line for the people affected by the multiple sclerosis. This service is provided by professional trained personnel or volunteers.
  • 7. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY  National Multiple Sclerosis Seminary - the 6th edition is addressed to the people with multiple sclerosis and to the family members. At this event, are presented themes of interest for people affected by multiple sclerosis in order to increase their life quality. A number of approximately 170 people take part at this event, on annual basis.
  • 8. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY
  • 9. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY  AWARENESS:  The International Rare Diseases Day 2009 – Information and Awareness Parade in Oradea organized in collaboration with other Non-Governmental Organizations for people with disabilities;  The Week of Hope – the third week from May, the Week of Hope is celebrated by and for people with multiple sclerosis.  International Multiple Sclerosis Day 2009 – 27th of May, for the first time this year the International Multiple Sclerosis Day has been celebrated. Our Society joined the international movement and organized information and awareness events.  Disability International Day – 3rd of December 2009.
  • 10. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY .
  • 11. ACTIVITIES CARRIED OUT BY THE ROMANIA MULTIPLE SCLEROSIS SOCIETY  LOBBY AND ADVOCACY o High-level Roundtable “European Code of Good Practices in Multiple Sclerosis”. o Actions undertaken by the Romanian MS Society in order to assure the provision of treatment and equal access to medical and social-services for people with multiple sclerosis. o Fundraising  Campaign 2%.  Charitable concerts.
  • 12. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY .
  • 13. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY  PROJECTS  Multiple Sclerosis – Informational Dividend (MS- ID), the project is developed and implemented by the European Multiple Sclerosis Platform, having partners 6 national societies from Great Britain, Germany, Ireland, Poland, Spain and Romania.  National Centre of Employment for people with multiple sclerosis and other neurological rare diseases – Access Ability, the project has been approved and will start up in 2009
  • 14. ACTIVITIES CARRIED OUT BY THE ROMANIAN MULTIPLE SCLEROSIS SOCIETY  PROJECTS FOR YOUNG PEOPLE WITH MULTIPLE SCLEROSIS: o Training for Social Involvement – project approved, starting date, October 2009. o We may speak so that you can understand – Multi-creatively Speaking (MS) – project approved, starting date, October 2009
  • 15. WHAT ARE OUR AIMS FOR THE FUTURE?  Development of the National Multiple Sclerosis Register  Development of the Center for Excellence in Multiple Sclerosis  Promoting national Partnerships: public – private; private – private  Promoting International Partnerships  Social – medical and socio-economic Research within Multiple Sclerosis
  • 16. DIALOG PARTNERS  European representative structures  Public central authority  Public local authority  Pharmaceutical Companies  Private and public educational institutions  Local, national and international non- governmental organizations in the medical, social-medical and social field.
  • 17. THANK YOU FOR YOUR ATTENTION! 

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