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


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

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

  1. 1. NoRo - updating Bucharest ; ; Dorica Dan – president RPWA/ RONARD BoD EURORDIS & IPWSO
  2. 2. Topics to be addressed <ul><li>Introduction </li></ul><ul><li>International context to promote such a project </li></ul><ul><li>Goal </li></ul><ul><li>Focus </li></ul><ul><li>Partners, Additional partners and international advisory committee; </li></ul><ul><li>Objectives </li></ul><ul><li>Activities and results developed up to date </li></ul><ul><li>Expected outcomes </li></ul><ul><li>Promotion of the project </li></ul><ul><li>Sustainability </li></ul>
  3. 3. Romanian Prader Willi Association - RPWA <ul><li>RPWA established in May 2003, with the main goal to bring together: patients, families and professionals in order to offer a better life for people affected by rare diseases in Romania; </li></ul><ul><li>Accreditated to offer: </li></ul><ul><ul><li>Information and counseling for RD </li></ul></ul><ul><ul><li>Personalized intervention therapy for autistic children; (Behavior therapy) </li></ul></ul><ul><ul><li>Authorized for: </li></ul></ul><ul><ul><li>research capacity; </li></ul></ul><ul><ul><li>training </li></ul></ul>
  4. 4. Short history <ul><li>2004 – International PWS Conference in new Zealand </li></ul><ul><li>2007 IPWSO Conference in Cluj </li></ul><ul><li>2007 – BoD IPWSO & EURORDIS </li></ul><ul><li>2008 call for application from Norway Grants – partnership with PWA Norway </li></ul><ul><li>2008 – partnership with FRAMBU </li></ul><ul><li>RELEVANCE: partners with the same vision and goals from 2 different realities; </li></ul><ul><li>2009 – starting project </li></ul><ul><li>- many challenges, but a strong partnership that built TRUST </li></ul><ul><li>Supportive aditional partners: ROAD, Kindness for Kids and EURORDIS </li></ul>Name of Conference – Date - City
  5. 5. <ul><li>Partners: </li></ul><ul><li>1. Norwegian PWS Association </li></ul><ul><li>2. FRAMBU – Norwegian Center for Rare Diseases </li></ul><ul><li>3. Ministry of Health Romania </li></ul><ul><li>4. Foundation ACASA </li></ul><ul><li>5. St. Family Church Zalau </li></ul><ul><li>6. City Hall Zalau/ DASC </li></ul><ul><li>7. County Council Salaj/ DGASPC </li></ul><ul><li>8. Romanian Medical Genetics Society </li></ul><ul><li>9. Medical University Timisoara </li></ul><ul><li>10. Romanian National Alliance for Rare Diseases </li></ul><ul><ul><li>Aditional resources partners: </li></ul></ul><ul><ul><li>ROAD, Kindness for k ids, EURORDIS; </li></ul></ul><ul><li>Aplicant: Romanian Prader Willi Association </li></ul>
  6. 6. <ul><li>Under diagnosis low number of patients/disease </li></ul><ul><li>lack of visibility NO monitoring system; </li></ul><ul><li>no designated centers of expertise NO place for evaluation; </li></ul><ul><li>distance among patients and professionals; </li></ul><ul><li>lack of awareness on patient and health provider level; </li></ul><ul><li>only few patients are eligible for treatments; </li></ul>
  7. 7. Norwegiano – Romanian partnership for progress in rare diseases - Noro <ul><li>Local, national and international context: </li></ul><ul><li>Pilot center for rare diseases included in the local council strategy promoted by RPWA and ACASA since 2008; </li></ul><ul><li>29 February 2008 – partnership with MoH Romania for a NPRD </li></ul><ul><li>June 2008 – the first national program for rare diseases </li></ul><ul><li>The Council Recommendation on Rare Diseases </li></ul>
  8. 8. <ul><ul><li>Patient organizations have to: </li></ul></ul><ul><li>Take a more active role in healthcare system in creating better treatments. </li></ul><ul><li>Create new resources together with the rest of the healthcare system not just passively wait for those needs to be fulfilled for you. </li></ul><ul><li>  Share common needs, even if the physical manifestations and symptoms of the diseases differ. </li></ul>We are part of the Health Care System, not outsiders
  9. 9. Norwegian Romanian (NoRo) Partnership for progress in RD <ul><li>AIM: To improve the quality of life for people affected by rare diseases (RD) in Romania </li></ul><ul><li>OBJECTIVES: </li></ul><ul><ul><ul><li>Establishing a NCRD - to define a team of professionals and patients' representatives; </li></ul></ul></ul><ul><ul><ul><li>Development of new high quality services for rare diseases in Romania on the national level through the creation of a Pilot Reference Center for personalized intervention for those affected by rare diseases. </li></ul></ul></ul>
  10. 10. NoRo <ul><ul><ul><li>To enhance the training capacity: </li></ul></ul></ul><ul><ul><ul><ul><li>to design and implement a training network for specialists and staff; </li></ul></ul></ul></ul><ul><ul><ul><ul><li>to create accredited online training courses (eUniversity) about rare diseases for professionals: social workers, psychologists, nurses, teachers, doctors, etc. </li></ul></ul></ul></ul><ul><ul><ul><li>Permanent development and maintaining of a shared best practice network on RD – NoRo . </li></ul></ul></ul>
  11. 11. The way it works
  12. 12. Services created <ul><li>Actual services of RPWA: </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Accredited for: </li></ul></ul></ul><ul><ul><li>Information and counseling for RD- Helpline </li></ul></ul><ul><ul><li>Behavioral therapy for children with RD from autistic spectrum </li></ul></ul><ul><ul><ul><ul><li>Authorized for: </li></ul></ul></ul></ul><ul><ul><ul><li>5 different training courses: </li></ul></ul></ul><ul><ul><li> MMSSF </li></ul></ul>
  13. 13. New services <ul><li>Day Care Centre </li></ul><ul><li>Residential center for respite services </li></ul><ul><ul><li>Training and therapy for patient groups </li></ul></ul><ul><ul><li>“ Trial for flight” </li></ul></ul><ul><li>eUniversity: </li></ul><ul><li>Help Line </li></ul><ul><li>Center for Information </li></ul><ul><ul><li>Teleconferences and telemedicine </li></ul></ul>Name of Conference – Date - City
  14. 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 )
  15. 15. Accreditation <ul><li>Accredited: </li></ul><ul><ul><li>Continues Medical Education from CMR – Doctors Collegium; </li></ul></ul><ul><ul><li>online training course: Management of the rare diseases – 18 credits from CMR; </li></ul></ul><ul><ul><li>Authorized for: </li></ul></ul><ul><ul><li>research capacity - CNCSIS </li></ul></ul>
  16. 16. Resources <ul><li>Resources to create the services: </li></ul><ul><ul><li>Project NoRo + contribution from all the partners + additional partners (ROAD, Kindness for Kids, Eurordis) </li></ul></ul><ul><ul><ul><li>Assesment on the quality life of patients with RD in Romania – University of Oradea </li></ul></ul></ul><ul><ul><ul><li>Advisory committee meetings </li></ul></ul></ul><ul><ul><ul><li>Implementation of ISO 9001 </li></ul></ul></ul>
  17. 17. <ul><li>Pilot Centre for Rare Diseases: </li></ul><ul><ul><li>How to address the main factors that isolate the patients and lock their chances to be integrated into community? </li></ul></ul><ul><ul><li>Appearances </li></ul></ul><ul><ul><li>Behavior </li></ul></ul><ul><ul><li>Ability to move </li></ul></ul><ul><ul><li>Mentality of patient and family </li></ul></ul><ul><ul><li>Lock of understanding of community and professionals </li></ul></ul>
  18. 18. <ul><li>Main interventions of the project: </li></ul><ul><li>develop skills to approach the RD for patients, professionals and parents; </li></ul><ul><li>improve understanding and support of community; </li></ul><ul><li>create a data base of patients with RD; </li></ul><ul><li>establish evidence based protocols for assistance and care for different RD; </li></ul><ul><li>start a model network in this field through the development of a strategic partnership: NGOs, national and international, Ministry of Health, Local Authorities, state departments, etc ; </li></ul>
  19. 19. Services for patients <ul><li>Quality services for RD? </li></ul><ul><ul><li>Answer to patients needs!!! </li></ul></ul><ul><ul><ul><li>We are developing a research regarding the life quality for people with RD in Romania; </li></ul></ul></ul><ul><ul><ul><li>We will develop personalized intervention plan for each case; </li></ul></ul></ul><ul><ul><ul><li>We will implement Quality standards ISO 9001 in our services from 01.11.2010; </li></ul></ul></ul>
  20. 20. Day care centre <ul><li>Services under development: </li></ul><ul><ul><li>A day care centre for children with RD from autistic spectrum </li></ul></ul><ul><ul><ul><ul><ul><li>Physical therapy </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Massage </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Sensorial therapy </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Hydro - kinetic - therapy </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Art therapy </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Behavior therapy </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Weight management </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Speech therapy </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>E ducational and entertainment activities. </li></ul></ul></ul></ul></ul>
  21. 21. Beneficiaries <ul><li>Beneficiaries: 35 children with RD from autistic spectrum, 3-14 years ; </li></ul><ul><li>Necessary resources: </li></ul><ul><ul><ul><ul><li>Human: special education teachers, psychologists, social worker, physiotherapist, genetic counselor, masseur, accountant, administrative person; </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Equipment and materials </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Space facilities </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Utilities </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Funding opportunities: </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Funding from Local Authority/ Local Council ( approved budget for 2011 ) </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Future Grants and parents contribution? </li></ul></ul></ul></ul>
  22. 22. Training for patients / Respite care <ul><li>Residential part/ respite services? </li></ul><ul><ul><li>Group of 12 patients with the same diseases and personal assistants will attend a 5 days training periodically </li></ul></ul><ul><ul><li>Content of the training courses: </li></ul></ul><ul><ul><ul><li>Diagnoses </li></ul></ul></ul><ul><ul><ul><li>Heredity </li></ul></ul></ul><ul><ul><ul><li>Symptoms, signs, course and complications </li></ul></ul></ul><ul><ul><ul><li>Measures and treatment </li></ul></ul></ul><ul><ul><ul><li>Education possibilities and training facilities for patients </li></ul></ul></ul><ul><ul><ul><li>Independence and work </li></ul></ul></ul><ul><ul><ul><li>Adult life </li></ul></ul></ul>
  23. 23. Beneficiaries <ul><li>Beneficiaries: - 12 persons/ group </li></ul><ul><li>Necessary resources : </li></ul><ul><ul><ul><li>1 social worker </li></ul></ul></ul><ul><ul><ul><li>1 nurse </li></ul></ul></ul><ul><ul><ul><li>2 trainers/ group </li></ul></ul></ul><ul><ul><ul><li>over night supervisors </li></ul></ul></ul><ul><ul><ul><li>materials </li></ul></ul></ul><ul><ul><ul><li>Utilities and space facilities </li></ul></ul></ul><ul><ul><ul><li>Funding opportunities: </li></ul></ul></ul><ul><ul><ul><li>Grants:2 applications (Medicor, Groupama) – to be evaluated soon. </li></ul></ul></ul>
  24. 24. Trial for flight <ul><li>Respite services (“trial for flight”) </li></ul><ul><ul><li>Training for an independent life </li></ul></ul><ul><ul><ul><li>6 consecutive weekends to train groups of young people with RD to be independent and to organize their life ; </li></ul></ul></ul><ul><ul><ul><li>Activities and training: </li></ul></ul></ul><ul><ul><ul><ul><li>skills and competences’ evaluation for beneficiaries </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Cooking </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Using money and shopping </li></ul></ul></ul></ul><ul><ul><ul><ul><li>House cleaning and gardening </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Orientation in town </li></ul></ul></ul></ul>
  25. 25. Beneficiaries <ul><li>Beneficiaries: - 12 persons/ group </li></ul><ul><li>Necessary resources : </li></ul><ul><ul><ul><li>1 social worker </li></ul></ul></ul><ul><ul><ul><li>1 nurse </li></ul></ul></ul><ul><ul><ul><li>over night supervisors </li></ul></ul></ul><ul><ul><ul><li>materials </li></ul></ul></ul><ul><ul><ul><li>Utilities and space facilities </li></ul></ul></ul><ul><ul><ul><li>Funding opportunities: </li></ul></ul></ul><ul><ul><ul><li>Grants </li></ul></ul></ul><ul><ul><ul><li>Parents/ personal contribution ? </li></ul></ul></ul>
  26. 26. Activities development <ul><li>Activities in the Center: </li></ul><ul><li>The personalized intervention </li></ul><ul><li>Children's daily schedule </li></ul><ul><li>Educational Activities </li></ul><ul><li>Recreational and social activities </li></ul><ul><li>Educational and vocational guidance and counseling </li></ul><ul><li>Advice and support for parents </li></ul><ul><li>Database of patients- registry </li></ul><ul><li>Administration and management </li></ul><ul><li>Social research </li></ul>
  27. 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. 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. 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. 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
  31. 31. Results to be achieved <ul><li>- 1 center built and equipped, 1 eUniversity </li></ul><ul><li>1000000 people informed about our activities </li></ul><ul><ul><li>Press monitorisation </li></ul></ul><ul><li>240 members of the families trained </li></ul><ul><ul><li>Certificates, online participants, workshops participants list, parents at ACASA; </li></ul></ul><ul><li>400 professionals trained </li></ul><ul><ul><li>> 800, list of participants in our events </li></ul></ul><ul><ul><li>3 new services created </li></ul></ul><ul><ul><li>4 awareness events </li></ul></ul><ul><ul><ul><li>2 RDD Campaigns , 2 EE PWS Conferences, 1 EUROPLAN, 1 Balkan Congress for RD </li></ul></ul></ul>
  32. 32. Rezults <ul><li>2 magazines: 1 for parents and patients and 1 for specialists; ; </li></ul><ul><li>2 books for children; </li></ul><ul><li>1 brochure with patient’s stories: RARE UNEQUAL; </li></ul><ul><li>3 printed training courses + 3 under printing </li></ul><ul><li>1 Guide for parents and patients; </li></ul><ul><li>1 Guide (book) for emergency services and exp.commiss.; </li></ul><ul><li>Leaflets and flyers; </li></ul><ul><li>Rollups; </li></ul><ul><li>Project report – to be printed; </li></ul><ul><li>Guide for teachers; </li></ul><ul><li>Posters;3 publicity events organized; </li></ul>
  33. 33. Potential budget reallocations <ul><li>Organizing teleconferences & telemedicine: equipment for Center + 7 Medical Universities in Romania (Timisoara, Cluj, Oradea, Iasi, Bucuresti, Sibiu, Constanta); </li></ul><ul><ul><li>1 interdisciplinary consultation/ week; </li></ul></ul><ul><ul><li>No more traveling for family; </li></ul></ul><ul><ul><li>Distance training for patient groups; </li></ul></ul><ul><ul><li>Better approach of the patients and savings in the budget; </li></ul></ul><ul><ul><li>Improved cooperation with the Universities; </li></ul></ul>Name of Conference – Date - City
  34. 34. Other opportunities created <ul><li>Presentation of the project at international conferences around the world ; </li></ul><ul><li>More visibility and related activities organized through linked projects: EUROPLAN, Rapsody online, BBBS , RDD ; </li></ul><ul><li>PWA- Clin- Epi- Gen – funded under the Program 4 – Partnerships in priority fields   </li></ul><ul><li>Projet coperation with MMSSF </li></ul><ul><li>Selection in the EUCERD </li></ul><ul><li>JARD – Joint Action for Rare Diseases </li></ul>Name of Conference – Date - City
  35. 35. Thank you!!!!!!! Name of Conference – Date - City