NoRo - updating

Bucharest

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

Dorica Dan – president RPWA/ RONARDBoD EURORDIS & IPWSO

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Topics to be addressed

• Introduction

• International context to promote such a project

•Goal

• Focus

• Partners, Additional partners and international advisory committee;

•Objectives

•Activities and results developed up to date

• Expected outcomes

• Promotion of the project

• Sustainability

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Romanian Prader Willi Association - RPWA

•RPWA established in May 2003, with the main goal to bring together: patients, families and professionals in order to offer a better life for people affected by rare diseases in Romania;

•Accreditated to offer: Information and counseling for RD Personalized intervention therapy for autistic children; (Behavior therapy)

Authorized for: research capacity; training

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Short history

• 2004 – International PWS Conference in new Zealand

• 2007 IPWSO Conference in Cluj

• 2007 – BoD IPWSO & EURORDIS

• 2008 call for application from Norway Grants – partnership with PWA Norway

• 2008 – partnership with FRAMBU

•RELEVANCE: partners with the same vision and goals from 2 different realities;

• 2009 – starting project

• - many challenges, but a strong partnership that built TRUST

• Supportive aditional partners: ROAD, Kindness for Kids and EURORDIS Name of Conference – Date - City

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• Partners:

• 1. Norwegian PWS Association• 2. FRAMBU – Norwegian Center for Rare Diseases• 3. Ministry of Health Romania• 4. Foundation ACASA• 5. St. Family Church Zalau • 6. City Hall Zalau/ DASC• 7. County Council Salaj/ DGASPC• 8. Romanian Medical Genetics Society• 9. Medical University Timisoara• 10. Romanian National Alliance for Rare Diseases

Aditional resources partners: ROAD, Kindness for k ids, EURORDIS;

• Aplicant: Romanian Prader Willi Association

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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;

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Norwegiano – Romanian partnership for progress in rare diseases - Noro

Local, national and international context:

Pilot center for rare diseases included in the local council strategy promoted by RPWA and ACASA since 2008;

29 February 2008 – partnership with MoH Romania for a NPRD

June 2008 – the first national program for rare diseases

The Council Recommendation on Rare Diseases

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Patient organizations have to:

• Take a more active role in healthcare system in creating better treatments.

•Create new resources together with the rest of the healthcare system not just passively wait for those needs to be fulfilled for you.

•  Share common needs, even if the physical manifestations and symptoms of the diseases differ.

We are part of the Health Care System, not outsiders

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Norwegian Romanian (NoRo) Partnership for progress in RD

AIM: To improve the quality of life for people affected by rare diseases (RD) in Romania

OBJECTIVES:–Establishing a NCRD - to define a team of

professionals and patients' representatives;

–Development of new high quality services for rare diseases in Romania on the national level through the creation of a Pilot Reference Center for personalized intervention for those affected by rare diseases.

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NoRo

To enhance the training capacity:

– to design and implement a training network for specialists and staff;

–to create accredited online training courses (eUniversity) about rare diseases for professionals: social workers, psychologists, nurses, teachers, doctors, etc.

Permanent development and maintaining of a shared best practice network on RD – NoRo.

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The way it works

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Services created

•Actual services of RPWA: http://www.apwromania.ro/oamenirari/

ghid_servicii_en/index.html?PHPSESSID=714f6b857e7c410a2b5db1ef26e3eba8

- Accredited for: - Information and counseling for RD- Helpline- Behavioral therapy for children with RD from

autistic spectrum- Authorized for:

- 5 different training courses: www.edubolirare.ro

MMSSF

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New services

•Day Care Centre•Residential center for respite services

Training and therapy for patient groups “Trial for flight”

•eUniversity:

•Help Line

•Center for Information

Teleconferences and telemedicine

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List of the training courses

Goal : 5 eLearning courses

Rezullts: 6 accredited courses + 1 under accreditation + extra module

Asistent personal al persoanei cu handicap grav (cod COR 513304)

Animator socio-educativ (Cod COR: 511307)

Pedagog de recuperare (Cod COR: 333003)

Lucrător prin arte combinate (cod COR 513905)

Evaluator de competențe profesionale (cod COR 241219)

Managementul în boli rare

CURS GRATUIT: Metode și tehnici de integrare a persoanelor cu dizabilitățiUnder evaluation: Personal professional assistant (COR 513304)

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Accreditation

•Accredited: Continues Medical Education from CMR – Doctors

Collegium; online training course: Management of the rare diseases

– 18 credits from CMR; Authorized for:

research capacity - CNCSIS

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Resources

Resources to create the services:

Project NoRo + contribution from all the partners + additional partners (ROAD, Kindness for Kids, Eurordis)

- Assesment on the quality life of patients with RD in Romania – University of Oradea

- Advisory committee meetings- Implementation of ISO 9001

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•Pilot Centre for Rare Diseases:How to address the main factors that isolate the patients and lock their chances to be integrated into community? AppearancesBehaviorAbility to move Mentality of patient and familyLock of understanding of community and professionals

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Main interventions of the project:

•develop skills to approach the RD for patients, professionals and parents;

• improve understanding and support of community;

• create a data base of patients with RD;

•establish evidence based protocols for assistance and care for different RD;

• start a model network in this field through the development of a strategic partnership: NGOs, national and international, Ministry of Health, Local Authorities, state departments, etc;

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Services for patients

Quality services for RD?

Answer to patients needs!!!–We are developing a research regarding the life

quality for people with RD in Romania;

–We will develop personalized intervention plan for each case;

–We will implement Quality standards ISO 9001 in our services from 01.11.2010;

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Day care centre

•Services under development: A day care centre for children with RD from autistic spectrum

»Physical therapy»Massage »Sensorial therapy»Hydro - kinetic - therapy»Art therapy»Behavior therapy»Weight management»Speech therapy»Educational and entertainment activities.

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Beneficiaries

•Beneficiaries: 35 children with RD from autistic spectrum, 3-14 years;

•Necessary resources:– Human: special education teachers, psychologists,

social worker, physiotherapist, genetic counselor, masseur, accountant, administrative person;

– Equipment and materials– Space facilities– Utilities

Funding opportunities:- Funding from Local Authority/ Local Council ( approved

budget for 2011 )- Future Grants and parents contribution?

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Training for patients / Respite care

•Residential part/ respite services? Group of 12 patients with the same diseases and personal

assistants will attend a 5 days training periodically Content of the training courses:

–Diagnoses–Heredity–Symptoms, signs, course and complications –Measures and treatment –Education possibilities and training facilities for

patients – Independence and work –Adult life

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Beneficiaries

•Beneficiaries: - 12 persons/ group

•Necessary resources : –1 social worker–1 nurse–2 trainers/ group–over night supervisors– materials–Utilities and space facilities

Funding opportunities:- Grants:2 applications (Medicor, Groupama) – to be

evaluated soon.

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Trial for flight

•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

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Beneficiaries

•Beneficiaries: - 12 persons/ group

•Necessary resources : –1 social worker–1 nurse–over night supervisors– materials–Utilities and space facilities

Funding opportunities:- Grants- Parents/ personal contribution?

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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

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În ce măsură calitatea vieții depinde de fizioterapie?

LIFE QUALITY ASSESMENT

Frequency PercentValid in foarte mare masura

adevarat49 8.2

in mare masura adevarat 164 27.4

moderat 145 24.2

in mica masura adevarat 87 14.5

deloc adevarat 118 19.7

Total 563 94.0

Missing NS/NR 33 5.5

System 3 .5

Total 36 6.0

Total 599 100.0

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MissingNS/NRdeloc adevaratin mica masura adevaratmoderatin mare masura adevarat

in foarte mare masura adevarat

sanatatea mea depinde de o anumita terapie precum kinetoterapia

Frequency PercentCumulative

PercentValid in foarte mare masura

adevarat 53 18,2 18,6

in mare masura adevarat 73 25,1 44,2 moderat 43 14,8 59,3 in mica masura adevarat 21 7,2 66,7 deloc adevarat 93 32,0 99,3 NS/NR 2 ,7 100,0 Total 285 97,9 Missing System 6 2,1 Total 291 100,0

În ce măsură sănătatea mea depinde de kinetoterapie?

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Cât de satisfăcut sunteți de suportul primit de la

familie?

Frequency PercentValid in foarte mare masura 279 46.6 in mare masura 251 41.9 moderat 37 6.2 in mica masura 10 1.7 deloc 10 1.7 Total 587 98.0Missing NS/NR 2 .3 System 10 1.7 Total 12 2.0Total 599 100.0

Missingdelocin mica masuramoderatin mare masurain foarte mare masura

suportul primit de la familie

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Cât de satisfăcut sunteți de calitatea serviciilor de îngrijire a

sănătății?

Frequency PercentValid in foarte mare masura 14 2.3 in mare masura 95 15.9 moderat 323 53.9 in mica masura 85 14.2 deloc 60 10.0 Total 577 96.3Missing NS/NR 9 1.5 System 13 2.2 Total 22 3.7Total 599 100.0

Missingdelocin mica masuramoderatin mare masurain foarte mare masura

calitatea serviciilor de ingijire a sanatatii

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Results to be achieved

- 1 center built and equipped, 1 eUniversity

•1000000 people informed about our activities Press monitorisation

•240 members of the families trained Certificates, online participants, workshops participants list,

parents at ACASA;

•400 professionals trained > 800, list of participants in our events 3 new services created 4 awareness events

–2 RDD Campaigns , 2 EE PWS Conferences, 1 EUROPLAN, 1 Balkan Congress for RD

–

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Rezults

• 2 magazines: 1 for parents and patients and 1 for specialists; www.rjrd.ro;

• 2 books for children;

• 1 brochure with patient’s stories: RARE UNEQUAL;

• 3 printed training courses + 3 under printing

• 1 Guide for parents and patients;

• 1 Guide (book) for emergency services and exp.commiss.;

• Leaflets and flyers;

•Rollups;

• Project report – to be printed;

•Guide for teachers;

• Posters;3 publicity events organized;

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Potential budget reallocations

•Organizing teleconferences & telemedicine: equipment for Center + 7 Medical Universities in Romania (Timisoara, Cluj, Oradea, Iasi, Bucuresti, Sibiu, Constanta); 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;

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Other opportunities created

• Presentation of the project at international conferences around the world;

• More visibility and related activities organized through linked projects: EUROPLAN, Rapsody online, BBBS , RDD;

• PWA- Clin- Epi- Gen – funded under the Program 4 – Partnerships in priority fields  

• Projet coperation with MMSSF

• Selection in the EUCERD

• JARD – Joint Action for Rare Diseases

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Thank you!!!!!!!

Name of Conference – Date - City