1. 1 Closing Conference on EEA Grants and Norway Grants Norwegian-Romanian ( NoRo) Partnership for progress in rare diseases Closing Conference on EEA Grants and Norway Grants www.apwromania.ro - www.bolirareromania.ro - http://anbraro.wordpress.com Dorica Dan president RPWA/ RONARD Vice President EURORDIS & BoD IPWSO

2. 2 Closing Conference on EEA Grants and Norway Grants 1. Introduction 2. Partners 3. International context to promote such a project 4. Goal & Objectives 5. Rezults 6. Challenges 7. Sustainability Topics to be addressed

3. 3 Closing Conference on EEA Grants and Norway Grants Introduction in RD: Rare but many!

4. 4 Closing Conference on EEA Grants and Norway Grants Introduction in RD: Rare but many!

5. 5 Closing Conference on EEA Grants and Norway Grants 01. Romanian Prader Willi Association (RPWA) 02. FRAMBU – Centre for rare diseases – Norway 03. Norwegian PWS Association 04. Ministry of Health Romania 05. Medicine University Timisoara 06. Romanian Genetics Society 07. ACASA Foundation 08. City Hall Zalau 09. County Council Salaj 10. St. Family Church 11. Romanian National Alliance for Rare Diseases Complementary partners: ROAD, KINDNESS FOR KIDS  External Advisors: David Oziel, Christel Nourisier, Frambu, PWNo,  Kindness for Kids, USA Partners:

6. 6 Closing Conference on EEA Grants and Norway Grants  Under diagnosis low number of patients/disease;  lack of visibility NO monitoring system;  no designated centers of expertise NO place for evaluation;  distance among patients and professionals;  lack of awareness on patient and health provider level;  only few patients are eligible for treatments; Needs assessment:

7. 7 Closing Conference on EEA Grants and Norway Grants Improved quality of life for people affected by rare diseases (RD) in Romania NoRo’s goal & objectives RDTF- a platform to debate Pilot Reference Center for RD e-University Best practice exchange Best practice exchange A team of patients and professionals www.edubolirare.ro Accreditation and authorization Building Equipments Services accreditation Exchange expertise Advisory committee

8. 8 Closing Conference on EEA Grants and Norway Grants The international, national and local context 29 February 2008 – partnership with MoH Romania for a NPRD June 2008 – the first national program for rare diseases National LevelRPWA+ RONARD+ SRGM Promotors: APWR+ ACASA Local level Pilot Reference Center for Rare diseases since 2008 The Council Recommendation on Rare Diseases RPWA+RONARD+EURORDISEU level

9. 9 Closing Conference on EEA Grants and Norway Grants New services created: 1 center built and equipped, online trainings for professionals: www.edubolirare.ro More than 1.000.000 people informed about our activities  Press monitorisation 240 members of the families trained  Certificates, online participants, workshops and conference’s participants list (464 in reality) 400 professionals trained  > 800, list of participants in our events 10 awareness events –2 RDD Campaigns, 4 press conference, 2 EE PWS Conferences, 1 EUROPLAN, 1 Balkan Congress for RD ResultsResults

10. 10 Closing Conference on EEA Grants and Norway Grants 2 magazines: 1 for parents and patients and 1 for specialists; 2 books for children; 1 brochure with patient’s stories: RARE UNEQUAL; 6 printed training materials; 1 Guide for parents and patients; 1 Guide (book) for emergency services and 1 for commissions for medical expertise; Leaflets, posters, rollups and flyers; Project report – to be printed; Guide for teachers; Guide of services (Romanian, English); Training calendar; ResultsResults

11. 11 Closing Conference on EEA Grants and Norway Grants Organizing teleconferences & telemedicine: equipment for Center + 7 Medical Universities in Romania (Timisoara, Cluj, Oradea, Iasi, Bucuresti, Tg Mures);  1 interdisciplinary consultation/ week;  No more traveling for family;  Distance training for patient groups;  Better approach of the patients and savings in the budget;  Improved cooperation with the Universities; Budget reallocations

12. 12 Closing Conference on EEA Grants and Norway Grants Introduction of the Center in the local budget for 2011 Becoming partners of MMSSF in a FSE project Nomination and selection in the EU CERD Eurordis Europlan advisor Election as vice president of Eurordis Nomination as a WP leader of the JARD 2012-2014 and coopted Frambu as a partner Decision of the partners to continue their cooperation in the future, maybe enlarge the number of Norwegian partners Award of excellence for edubolirare at the eHealth conference organized by Tarus media Sustainability and indirect results

13. 13 Closing Conference on EEA Grants and Norway Grants At the beginning it was just a dream… starting in 2004... “If you fight for your dream, one day the dream will fight for you, too!” 2009 NoRo implementation 2011 FINISH OR START ? 2008 CALL FOR PROPOSAL

14. 14 Closing Conference on EEA Grants and Norway Grants NPRD - Information is a source of learning, but unless it is organized, processed, and available to the right people in a format for decision making, it is a burden, not a benefit. A global approach (holistic, comprehensive) integrating A global approach (holistic, comprehensive) integrating medical and social aspects Education, information and communication Education, information and communication eUniversity eUniversity Information for general public and training for professionals Authorized and accredited Pilot Reference Centre for RD - response to the needs of the patients Pilot Reference Centre for RD - response to the needs of the patients Quality standards in our services TEAM – Together everybody achieve more! Training activities for patients and careers Activities to empower patients and collaboration with other patient organisations Sharing knowledge and best practice Sharing knowledge and best practice Patient access to a multidisciplinary team of experts Patient access to a multidisciplinary team of experts Combination of research and care Combination of research and care Coordination between professionals Coordination between professionals

15. 15 Closing Conference on EEA Grants and Norway Grants Political and economic instability/ economic crize Changed legislation and increased VAT and taxes Different approach in different realities Increased complexity of the problems in RD: more interest more responsibility! Contestations for construction Floods Landslides Long winter Supplementary work to reinforce the land, new technical solutions Unexpected needs: advisory committee, life quality assesment and Quality standards implementation in our services Challenges in the last 2 years:

16. 16 Closing Conference on EEA Grants and Norway Grants Partners have been selected because they shared the same background, goal, enthusiasm and built TRUST Involving partners in all stages of the project and keep the enthusiasm– from the proposal time to the final report There are two things to aim at in life: first, to get what you want and, after that, to enjoy it…and we did it Team involvement at large: staff, volunteers, constructor, architect, supervisors, authorities, etc. Complementarities and cooperation with other EU projects; Promotion of the project and the partnership at EU level Continuous information of the local and national authorities Success key

17. 17 Closing Conference on EEA Grants and Norway Grants PATIENT-RUN AND MULTI-STAKEHOLDERS NoRo and EU level RESULT-ORIENTED / to improve the existing country services for RDs Centre NoRo have been established to play a pivotal role in closing the gap between research and care, using the best EU modell in RD: Frambu Mapping out the social services in Romania was considered a necessary exercise as the proximity of care is necessary – need of training of the professionals involved !!! Information sources for patients and professionals should be validated to ensure a consistent quality level MethodologyMethodology

18. 18 Closing Conference on EEA Grants and Norway Grants 2. D ESIGNING D ESIGNING C URRICULA C URRICULA for different training programs  Rehabilitation teacher,  Socio-educative animator,  Combined arts therapist,  Dietetitian nurse,  Competence evaluator,  Personal assistant of severe disabled people,  Management of the RD Training network:

19. 19 Closing Conference on EEA Grants and Norway Grants 3. B UILDING B UILDING T HE T HE P ILOT P ILOT CENTRE CENTRE FOR FOR R ARE R ARE D ISEASES Services:

20. 20 Closing Conference on EEA Grants and Norway Grants MAIN MAIN functions functions in Pilot reference centre for rare diseases: medical, counseling office meeting room for support groups, training & conferences Residential space: 5 rooms with two beds, 1 room with 1 bed, bathrooms, and kitchen area Day center spaces with rooms for: educational, sensory therapy, behavior therapy, kinetotherapy, speech therapy, hydrotherapy, physiotherapy space for the "outdoor" activities, playgrounds NoRoNoRo

21. 21 Closing Conference on EEA Grants and Norway Grants Respite Respite services (“trial for flight”)  Training for an independent life –6 consecutive weekends to train groups of young people with RD to be independent and to organize their life ; Activities and training: –skills and competences’ evaluation for beneficiaries –Cooking –Using money and shopping –House cleaning and gardening –Orientation in town Trial for flight

22. 22 Closing Conference on EEA Grants and Norway Grants Activities in the Center: The personalized intervention Children's daily schedule Educational Activities Recreational and social activities Educational and vocational guidance and counseling Advice and support for parents Database of patients- registry Administration and management Social research Activities development

23. 23 Closing Conference on EEA Grants and Norway Grants

24. 24 Closing Conference on EEA Grants and Norway Grants The award offered by Tarus media for excellence in eHealth

25. 25 Closing Conference on EEA Grants and Norway Grants It takes a lot of courage to stand up and defend your ideas, but it is equally courageous to sit down and try to understand the others… Thank you!