Upload
willis-boone
View
228
Download
9
Tags:
Embed Size (px)
Citation preview
1Closing Conference on EEA Grants and Norway
Grants
Norwegian-Romanian ( NoRo) PartnershipNorwegian-Romanian ( NoRo) Partnershipfor progress in rare diseasesfor progress in rare diseases
Closing Conference on EEA Grants and Norway Closing Conference on EEA Grants and Norway GrantsGrants
www.apwromania.ro - www.bolirareromania.ro - http://anbraro.wordpress.com
Dorica Danpresident RPWA/ RONARD
Vice President EURORDIS & BoD IPWSO
2Closing 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 addressedTopics to be addressedTopics to be addressedTopics to be addressed
3Closing Conference on EEA Grants and Norway
Grants
Introduction in RD: Introduction in RD: Rare but many!Rare but many!
4Closing Conference on EEA Grants and Norway
Grants
Introduction in RD: Introduction in RD: Rare but many!Rare but many!
5Closing 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
PartnersPartners::PartnersPartners::
6Closing 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:Needs assessment:Needs assessment:Needs assessment:
7Closing Conference on EEA Grants and Norway
Grants
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
8Closing Conference on EEA Grants and Norway
Grants
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
9Closing 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
ResultsResultsResultsResults
10Closing 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;
ResultsResultsResultsResults
11Closing 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 reallocationsBudget reallocationsBudget reallocationsBudget reallocations
12Closing 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 Sustainability and indirect results Sustainability and indirect results Sustainability and indirect results
13Closing Conference on EEA Grants and Norway
Grants
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
14Closing Conference on EEA Grants and Norway
Grants
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
15Closing 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:Challenges in the last 2 years:Challenges in the last 2 years:Challenges in the last 2 years:
16Closing 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 keySuccess keySuccess keySuccess key
17Closing 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
MethodologyMethodologyMethodologyMethodology
18Closing Conference on EEA Grants and Norway
Grants
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::
19Closing Conference on EEA Grants and Norway
Grants
3. BUILDING3. BUILDING THE PILOT CENTRE FOR THE PILOT CENTRE FOR RARE DISEASESRARE DISEASES
ServicesServices::ServicesServices::
20Closing Conference on EEA Grants and Norway
Grants
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
21Closing Conference on EEA Grants and Norway
Grants
• 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
22Closing Conference on EEA Grants and Norway
Grants
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
23Closing Conference on EEA Grants and Norway
Grants
24Closing Conference on EEA Grants and Norway
Grants
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
25Closing 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!