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Norwegian-Romanian ( NoRo) PartnershipNorwegian-Romanian ( NoRo) Partnershipfor progress in rare diseasesfor progress in rare diseases

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www.apwromania.ro - www.bolirareromania.ro - http://anbraro.wordpress.com

Dorica Danpresident RPWA/ RONARD

Vice President EURORDIS & BoD IPWSO

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1. Introduction

2. Partners

3. International context to promote such a project

4. Goal & Objectives

5. Rezults

6. Challenges

7. Sustainability

Topics to be addressedTopics to be addressedTopics to be addressedTopics to be addressed

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Introduction in RD: Introduction in RD: Rare but many!Rare but many!

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Introduction in RD: Introduction in RD: Rare but many!Rare but many!

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• 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

PartnersPartners::PartnersPartners::

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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:Needs assessment:Needs assessment:Needs assessment:

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Improved quality of life for people affected by rare diseases (RD) in Romania

NoRo’s goal & objectivesNoRo’s goal & objectivesNoRo’s goal & objectivesNoRo’s goal & objectives

RDTF- a RDTF- a platform to platform to

debatedebate

Pilot Pilot Reference Reference Center for Center for

RDRD

e-e-UniversityUniversity

Best Best practice practice

exchangeexchange

A team of patients

and profession

alswww.edubolirare

.ro

Accreditation and

authorization

BuildingEquipments

Services accreditatio

n

Exchange expertise

Advisory committee

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The international, national and local contextThe international, national and local contextThe international, national and local contextThe 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 Level RPWA+ RONARD+ SRGM

Promotors: APWR+ ACASALocal level

Pilot Reference Center for Rare diseases since 2008

The Council Recommendation on Rare Diseases

RPWA+RONARD+EURORDISEU level

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• 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

ResultsResultsResultsResults

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•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;

ResultsResultsResultsResults

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•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 reallocationsBudget reallocationsBudget reallocationsBudget reallocations

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• 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 Sustainability and indirect results Sustainability and indirect results Sustainability and indirect results

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At the beginning it was just a dream…At the beginning it was just a dream…starting in starting in 2004...2004...

““If you fight for your dream, one day the dream If you fight for your dream, one day the dream will fight for you, too!”will fight for you, too!”

““If you fight for your dream, one day the dream If you fight for your dream, one day the dream will fight for you, too!”will fight for you, too!”

2009 NoRo implementation

2011 FINISH OR START ?

2008 CALL FOR PROPOSAL

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NPRD - Information is a source of learning, but unless it is NPRD - Information is a source of learning, but unless it is organized, processed, and available to the right people in a organized, processed, and available to the right people in a

format for decision making, it is a burden, not a benefit. 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 medical and social aspects

•Education, information and communication Education, information and communication

eUniversity eUniversity Information for general public and training for professionals Information for general public and training for professionals

Authorized and accredited Authorized and accredited

Pilot Reference Centre for RD - response to the Pilot Reference Centre for RD - response to the needs of the patients needs of the patients

Quality standards in our services Quality standards in our services TEAM – Together everybody achieve more! 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

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• 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:Challenges in the last 2 years:Challenges in the last 2 years:Challenges in the last 2 years:

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•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 keySuccess keySuccess keySuccess key

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• 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

MethodologyMethodologyMethodologyMethodology

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2. DESIGNING CURRICULA for different training 2. DESIGNING CURRICULA for different training programs programs

Rehabilitation teacher,

Socio-educative animator,

Combined arts therapist,

Dietetitian nurse,

Competence evaluator,

Personal assistant of severe disabled people,

Management of the RD

Training networkTraining network::Training networkTraining network::

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3. BUILDING3. BUILDING THE PILOT CENTRE FOR THE PILOT CENTRE FOR RARE DISEASESRARE DISEASES

ServicesServices::ServicesServices::

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MAIN MAIN ffunctionunctions in Pilot s in Pilot reference reference centre for rare centre for rare diseasesdiseases: :

•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

NoRoNoRoNoRoNoRo

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• Respite services Respite services (“trial for flight”)(“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: Activities and training: –skills and competences’ evaluation for beneficiaries

–Cooking–Using money and shopping –House cleaning and gardening–Orientation in town

Trial for flightTrial for flightTrial for flightTrial for flight

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Activities in the Center: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 developmentActivities developmentActivities developmentActivities development

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The award offered by Tarus media for excellence in The award offered by Tarus media for excellence in eHealth eHealth The award offered by Tarus media for excellence in The award offered by Tarus media for excellence in eHealth eHealth

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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!