Zsuzsa.actualizare NoRo En

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Norwegian-Romanian (NoRo)

Partnership for Progress in RareDiseases

- Project update -

Lázár Zsuzsa



To improve the quality of life for people

affected by rare diseases in Romania by

providing equal access to early diagnosis,

quality treatment and rehabilitation services

through a comprehensive and accessible

network of facilities and resources as set

forth by the National Plan for RareDiseases.



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

Aplicant: Romanian Prader Willi Association



± OBJECTIVES:

1. Interdisciplinary Committee for RD

2. Establishing new services for rare diseases.

a. Developing and implementing a training network for specialists and staff involved in the diagnosis, treatment and rehabilitation of people with rare diseases.

b. The creation of accredited online training courses(eUniversity) about rare diseases for professionals:social workers, psichologists, nurses, teachers, doctors,etc.

c. The creation of a Pilot Reference Center for RD

3. Permanent development and maintaining of ashared best practice network on RD (NoRo)



Results on type of activities at

30th of September 2010:

1. Creating a Pilot Reference Center for Rare

Diseases

a) Construction of a Pilot Reference Center for Rare Diseases

- A residential part- Day center / kindergarten

a) Administrative activities and staff



a) Construction of a Pilot ReferenceCenter for Rare Diseases

- Management plan for renovation and extension

± end of 2009



a) Construction of the Center

- Work acquisition procedures - Through thenational, electronic system for bids ± SEAP

- In 19th of April we started the work with anofficial ceremony




- The bad weather challenged us a few times,but even if we had supplementary work aswell:



b) Administrative activities and staff - Regular meetings of the project team

- Participation at the Workshop for implementation of projects financed under the

Norwegian Cooperation Programme- Applying for joining the European Network of

Rare Diseases Help Lines

- Monitoring visit of Innovation Norway ± in

March- Developing the design and implementingmanagement quality standard SR EN ISO 9001:2008

- Survey ± Quality of life of patients with RD



2) Training network in RD

a) Conferences, courses, face to face

trainings- launch of the project at the first EE PWS

Conference

April 2009



a) Conferences, courses, face to facetrainings

- Balkan Congress of Rare Diseases- Comprehensive Teaching Methods for

children with autism ± Workshop

- Finding and evaluating health information

on theInternet ± Workshop- Rare Disease Day Campaign ± Conferences,

raising the sensitivity of general public

- EUROPLAN Conference ± June 2010



a) Conferences, courses, face to facetrainings

Authorized training courses:

1. Personal Assistant of Severely DisabledPerson (Code for Occupation in Romania513304) ± 3 groups trained

2. Socio-Educational Animator (COR : 511307),

3. Occupational and Art Therapist (COR:513905),

4. Recovery Therapist (COR : 333003),

5. Professional Competence Assessor (COR :241219).



b) National Committee for rare Diseases

- members: specialists, patients,authorities

- 7 meeting:- Evaluating the

situation and the needs

in Romania

- Developing theNational Plan for

Rare Diseases

- Guidelines in RD



c) eUniverity ± a platform of informationand training in RD

- Preparing the structure

- Designing the training materials

- Procurement of materials- Advisory Committee meeting ±eUniversity

- Exchange of

experience in Norway

at University of Tromso



3) Specialized services for people withRD using the FRAMBU model

a) Services for beneficiaries- 7 groups of patients at the Acasa

Foundation



a) Services for beneficiaries

- Behavioral therapy for children withautistic disorders

- we reached the maximum capacity of 20 children intherapy

- Other activities for

the children



a) Services for beneficiaries

- Support groups for parents

- Special Olympics

- Camp for Disabled Youth in Bobald- Help Line ± 214 registered calls



b) Exchange of experience with our Norwegian partners

- Thanks for the many occasions they visited usand presented their methods of work. We arelooking forward to see ourselves how theywork in Norway.

- Any time we asked

our partners, they came

and supported us.



c) Publicity and publications

- 13 numbers of ³Rare People and Rare

Diseases´- 3 numbers of ³Journal of Rare Diseases´

- ³Together in the World of Innocence´



c) Publicity and publications

- 2 infokiosks

- 2 publicity events (Moment Zero,EUROPLAN)

- Website:www.apwromania.ro

- Blogwww.anbraro.wordpress.com

www.ziuabolilorrare.wordpress.com



Norwegian-Romanian (NoRo) Partnershipfor Progress in Rare Diseases

- Committee for Rare Diseases- Pilot Reference Center for RD

- New socio-medical services

- eUniversity

- Exchange of good practices



Thank you for your attention!

Zsuzsa.actualizare NoRo En

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