Norwegian-Romanian (NoRo)

Partnership for Progress in Rare

Diseases
- 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 Rare
Diseases.
• 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 a
shared 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 Reference
Center for Rare Diseases
- Management plan for renovation and extension
– end of 2009
a) Construction of the Center
- Work acquisition procedures - Through the
national, electronic system for bids – SEAP
- In 19th of April we started the work with an
official ceremony
a) Construction of the Center
- The bad weather challenged us a few times,
but even if we had supplementary work as
well:
a) Construction of the Center
a) Construction of the Center
a) Construction of the Center
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 implementing
management 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 face
trainings

- Balkan Congress of Rare Diseases

- Comprehensive Teaching Methods for
children with autism – Workshop
- Finding and evaluating health information
on the Internet – Workshop
- Rare Disease Day Campaign – Conferences,
raising the sensitivity of general public
- EUROPLAN Conference – June 2010
a) Conferences, courses, face to face
trainings
Authorized training courses:
1. Personal Assistant of Severely Disabled Person
(Code for Occupation in Romania 513304) – 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).
a) Conferences, courses, face to face
trainings

Management of Rare Diseases –

accredited by Romanian Doctors
Collegium

- 7 members of our team were formed as

trainers in adult education.
b) National Committee for rare Diseases
- members: specialists, patients,
authorities
- 7 meeting:
- Evaluating the
situation and the needs
in Romania
- Developing the
National Plan for
Rare Diseases
- Guidelines in RD
c) eUniverity – a platform of information
and 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 with
RD using the FRAMBU model

a) Services for beneficiaries

- 7 groups of patients at the Acasa
Foundation
a) Services for beneficiaries
- Behavioral therapy for children with
autistic disorders
- we reached the maximum capacity of 20 children in
therapy
- 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 us

and presented their methods of work. We are
looking forward to see ourselves how they
work in Norway.
- Any time we asked
our partners, they came
and supported us.
c) Publicity and publications

- 13 numbers of “Rare People and Rare

Diseases”
- 3 numbers of “Journal of Rare Diseases”
- “Together in the World of Innocence”
c) Publicity and publications

- 2 infokiosks
- 2 publicity events (Moment Zero,
EUROPLAN)

- Website:
www.apwromania.ro
- Blog
www.anbraro.wordpress.com
www.ziuabolilorrare.wordpress.com
Norwegian-Romanian (NoRo)
Partnership for 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!