Norwegian-Romanian No Ro Partnership for progress in

Norwegian-Romanian ( No. Ro) Partnership for progress in rare diseases Dorica Dan president RPWA/ RONARD Vice President EURORDIS & Bo. D IPWSO Closing Conference on EEA Grants and Norway Grants www. apwromania. ro - www. bolirareromania. ro - http: //anbraro. wordpress. com 1 Closing Conference on EEA Grants and Norway Grants

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

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

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

Partners: • 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 § § 5 External Advisors: David Oziel, Christel Nourisier, Frambu, PWNo, Kindness for Kids, USA Closing Conference on EEA Grants and Norway Grants

Needs assessment: Under diagnosis lack of visibility low number of patients/disease; 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; 6 Closing Conference on EEA Grants and Norway Grants

No. Ro’s goal & objectives RDTF- a platform to debate A team of patients and professionals Building Equipments Services accreditation Pilot Reference Center for RD Improved quality of life for people affected by rare diseases (RD) in Romania www. edubolirare. ro e-University 7 Accreditation and authorization Exchange expertise Advisory committee Best practice exchange Closing Conference on EEA Grants and Norway Grants

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

Results • New services created: 1 center built and equipped, online trainings for professionals: www. edubolirare. ro • More than 1. 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 9 Closing Conference on EEA Grants and Norway Grants

Results • 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; 10 Closing Conference on EEA Grants and Norway Grants

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

Sustainability and indirect results • 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 e. Health conference organized by Tarus media 12 Closing Conference on EEA Grants and Norway Grants

“If you fight for your dream, one day the dream will fight for you, too!” 2011 FINISH OR START ? 2009 No. Ro just a dream… At the beginning it wasimplementation starting in 2004. . . 2008 CALL FOR PROPOSAL 13 Closing Conference on EEA Grants and Norway Grants

NPRD - • Information is a source of learning, but unless • A global access activities for comprehensive) integrating Patient approacha multidisciplinary team of experts • Training to e. University and careers Pilot Reference Centre(holistic, -patientsachieve it is organized, for RD response to the needs of the TEAM – • Together public and our services other patient Quality standards people incare professionals • Activities to empower knowledgesocialtraining a format for decision processed, and Sharing patients rightcollaboration withmore! Informationavailable to the and in best practice for general everybody Combination and aspects for medical of research and • Education, it isorganisations communication • making, information and a benefit. Coordinationapatientsnot Authorized and accredited between professionals burden, 14 Closing Conference on EEA Grants and Norway Grants

Challenges in the last 2 years: • 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 15 Closing Conference on EEA Grants and Norway Grants

Success key • 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 16 Closing Conference on EEA Grants and Norway Grants

Methodology • PATIENT-RUN AND MULTI-STAKEHOLDERS • No. Ro and EU level • RESULT-ORIENTED / to improve the existing country services for RDs Centre No. Ro 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 17 Closing Conference on EEA Grants and Norway Grants

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

Services: 3. BUILDING THE PILOT CENTRE FOR RARE DISEASES 19 Closing Conference on EEA Grants and Norway Grants

No. Ro MAIN 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 20 Closing Conference on EEA Grants and Norway Grants

Trial for flight • Respite services (“trial for flight”) § 21 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 Closing Conference on EEA Grants and Norway Grants

Activities development 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 22 Closing Conference on EEA Grants and Norway Grants

23 Closing Conference on EEA Grants and Norway Grants

The award offered by Tarus media for excellence in e. Health 24 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! 25 Closing Conference on EEA Grants and Norway Grants