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www.innovcare.eu
The role of patients’ organization
Training PWS – Timisoara, 26-27.02.2018
Romanian Prader Willi Association
www.apwromania.ro
05/03/2018
Training PWS, Timisoara 26-27.02.2018
www.innovcare.eu
The start
• Almost all Patient organization have a story of a patient, a child or a family…
• All starts with a personal experience
• You start trying to change your own situation and finally, you realize that you have to change the entire system
• This is how we started in 2003
• Our daughter Oana has been diagnosed with PWS
• She was late diagnosed in Italy at BIRD (she was 18 years) and it took 10 years until this genetic test was possible….
• IPWSO: www.ipwso.org was there to support our family and the development of RPWA: www.apwromania.ro
05/03/2018 Training PWS, Timisoara 26-27.02.2018
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• Rare, highly complex, chronic, severely disabling
• Scarcity of information on diseases & consequences on daily life
• Scarcity and scattering of experts and resources
• Lack of treatment
• Lack of good practices
• Difficulties to transfer information/knowledge between care providers and to ensure coordinated care provision
> For more than 5000 different rare diseases there is NO TREATMENT!
Background: Specific Challenges of RDs
The needs of people living with rare diseases are many and require coordinated multidisciplinary care.
In most countries the care pathways are not structured and patients often struggle to access the services and the support they need.
Needs and pathways…
https://prezi.com/efzzocrp6kk2/circuitul-pacientului
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How do people understand RD patients?
RPWA was established in 2003 – member of IPWSO First international meeting in 2004 in Zalau Attending the 5th International PWS Conference in Christchurch, New Zealand Opened the Center for Information about Rare Genetic Diseases in 2005 1 Session about PWS at the Balkan Congress for Endocrinology Bucharest The 6th International PWS Conference in Cluj- Napoca, June 2007 1st National Conference about Rare Diseases, 1-3 November 2007- member of EURORDIS 1st European RDD – 29 February 2008 –NPRD partnership with the MoH; every year RDD Campaign;
Renewed partnership 2013; 2014 – National Strategy for Health; 1st National Program for Rare Diseases - 2008; May 2009 – 1st EE Conference on PWS, Timisoara;2010 Zalau; Balkan Congress for RD, Cluj – June 2009 Implementation of the NoRo Project: 2009 -2011 2010 – EUROPLAN1 and annual conferences or workshops; 2010 – The 2nd EE Conference on PWS 2011 – June 28, Official opening of the Center
Projects implemented in partnership with Frambu:
2011 – Opening of NoRo Center (Norwegian- Romanian, partnership for future in rare diseases) AD AUGUSTA PER ANGUSTA NoRo- Frambu, partnerhip for the future TEAM – Together, everybody achieve more DocumentRARE – 2017 INNOVCare ( Oct. 2015- Sept 2018)
RPWA brief history:
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Integrated care at NoRo Center
05/03/2018
OPPORTUNITIES Members of EURORDIS Collaboration with professionals and authorities Local strategy and NPRD Funding opportunities & responsible implementation Sustainable partnership Involvement at national and EU level Rare Diseases Day 2007 -2017 EC Communication and Recommendation for RD Participating in the EUROPLAN Project, EJA RD, INNOVCare & RD Action
CHALLENGES
Low numbers low interest!!! No other services like this! No collaboration between social and
medical services, national and local; No information accessible No cooperation between professionals
and patients and not even between POs
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Sustainability of our partnership
Common approach at EU level:
- Presentations & Posters at ECRD;
- Attending / organizing workshops in the context of EU Joint Actions for Rare Diseases (WP6)
- Country visits (2012, 2013, 2014,2016,2017)
- Launching EEA Grants in Praque & EC HC Program, 2014
- INNOVCare
Projects 2008-2017 1. NoRo – Norwehian – Romanian
partnership for progress in RD 2. Ad augusta per angusta 3. NoRo – Frambu, partnership for the
future 4. Team 5. DocumentRARE
To improve the quality of life for people affected by rare
diseases (RD) in Romania
RDTF- a
platform to
debate
Pilot Reference
Center for RD
e-University
Best practice
exchange
A team of
patients and
professionals
www.edubolirare.ro
Accreditation
and
authorization
Building
Equipments
Services
accreditation
Exchange
expertise
NCRD CoE
RAREsourceNet Online & F2F
NoRo Center – from project to a HCP
Medical services in contract with NHI – HCP Accreditation
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Different specialties, permanent staff: pediatric psychiatry and geneticist, other specialists if needed
Individual therapies: Psychological intervention, hydrotherapy, medical gymnastic, speech therapy, behavior, sensorial, electric therapy and social counseling;
Group therapy and interventions:
Psychological counseling, occupational therapy, ergo therapy;
HelpLine Part of the Eurordis network of Help Lines
Trainings and online platform: www.edubolirare.ro & 2 magazines (www.rjrd.ro)
Diseases management, “Trial for flight”- life skills, trainings for professionals;
Registry NoRo Patient registry
Information Website, Facebook, blog, magazines, Radio NoRo – the voice of patients (RONARD)
Integrated approach:
12
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NoRo Center
05/03/2018 Training PWS – Timisoara, 26-27 February2018
Ensuring that all the groups of stakeholders understand each other better and can come to the best conclusions for their communities
Building a sustainable partnership in the healthcare system, able to take care of rare disease patients
A unique role of an organization
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• Networking: with other POs at national and international level, Professional Organizations, service providers, industry, sponsors, funders, authorities: local, national and EU level, CoE, ERNs, CAN, Eurordis, RDI;
www.edubolirare.ro
www.rjrd.ro
www.participrare.ro
www.aspac.ro
www.radionoro.ro
Communication and collaboration
www.innovcare.eu Being involved in global changing
2003 – RPWA: www.apwromania.ro;2007- RONARD: www.bolirareromania.ro & 2011 – ARCrare: www.arcrare.ro
www.edubolirare.ro : online platform for information and trainings for professionals (accredited both for F2F and online)
www.participrare.ro (map of services, legislation for RDs, videos, communication for patients and professionals)
www.rjrd.ro – Romanian Journal for Rare Diseases (SRGM) + Rare People and Rare Diseases
www.radionoro.ro – Radio NoRo, the voice of patients
www.aspac.ro – organizational development through online trainings for patient organizations
Accredited medical, social and educational services
Providing services for patients with rare diseases in our country at NoRo and advocating for the implementation of the National Plan for Rare Diseases…and many other
www.innovcare.eu When you fight for your dream…
NoRo Center – opened in June 2011 in Zalau
A HelpLine- part of the Eurordis networ of HelpLines, Day care center for 54 children with RDs and from autistic spectrum disorders and Residential center for groups of patients with rare diseases (same RDs) for 5 days/ month and a group “Trial for flight” for training life skills for young people with RDs
Implemets ISO 9011 in our services
Certified as a Center for Expertise for rare diseases and autistic spectrum disorders by Ministry of Health in 2017
Organized a national network (RO- NMCA ID) together with Genetic Centers from Oradea, Timisoara, Iasi and Craiova and have been accepted as part of the European Reference network for Congenital anomalies and Intelectual Disabilities
Part of the RareResourceNet – EU Network for Resource Centers for Rare Diseases (Agrenska, NoRo and Frambu – steering group)
Use in our services: LMD – London Medical Database, videoconference system (NoRo & 6 medical centers in the country), MIRA Rehab system, online training, case management and NoRo patient online registry….
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HelpLine
05/03/2018 KOM Madrid, 20-21 July 2016
•Help Line NoRo : 0260-610033 •or e-mail: [email protected] și [email protected]
www.edubolirare.ro https://www.youtube.com/watch?v=hIgOXHdcLjg
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Redesigning the services: New development:
3 (2) doctors
Equipments: EEG, EKG, EMG, Echography, DNA Extractor, Body fat monitor, London Medical Database;
Psychological tests
MIRA & Deep Oscillation;
Summer camps
Videoconference system
Guidelines for emergency services, integrated care, the national map of services on www.participrare.ro
Electronic patients’ registry
2 magazines
www.edubolirare.ro
Promotion:
National campaigns Presentations, films
and videos; Guide of NoRo
Services www.participrare.ro www.radionoro.ro http://www.socialplatform.org/…/investing-in-services-for-…/
05/03/2018 KOM Madrid, 20-21 July 2016
NoRo Story:
https://drive.google.com/file/d/0BwbsYEooKmnmdElLQTdMTzViUms/view
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• Did we improve patient quality of life in Romania? • Clip NoRo -http://www.youtube.com/watch?v=GDPuTzBVhW0
Yes, but there is still a long way until we can sleep…
Conclusion
