dorica (noro) parternership for progress in

8/9/2019 Dorica (NoRo) Parternership for Progress In

1/29

Norwegian-Romanian (NoRo)

Partnership for Progress in RareDiseases


2/29

SHARED AN INSPIRED VISIONIN RARE DISEASES


3/29

Norwegian-Romanian (NoRo) Partnership

for Progress in Rare Diseases

Applicant : Romanian Prader Willi Association

Partners:

1. Romanian Prader Willi Association

2. Romanian National Alliance for Rare Diseases

3. Norwegian PWS Association 4. FRAMBU No Center for Rare Diseases

5. Ministry of Health Romania

6. Foundation ACASA

7. St. Family Church Zalau

8. City Hall Zalau/ DASC

9. County Council Salaj/ DGASPC 10. Medical University Timisoara

11. Romanian Society for Medical Genetics

Additional partners


4/29

Project aim:

To improve the quality of life for people affected by

rare diseases in Romania by providing equal accessto 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.


5/29

Objectives : 1. Establishing a Rare Diseases Task Force- RDTF:

The main criteria for selecting members of this working group

will include:

a. Familiarity and knowledge of the work through the

documentation: publications, training, grants;b. Had a contribution in creating protocols, recommendations;

shared (partnerships) expertise with other experts ;

d. Demonstrated open collaboration with organizations of

patients;


6/29

The role of the RDTF

The role of the group: the evaluation of rare diseases inRomania (patient cases, treatments available, training needs andinformation) and propose actions (medical measures, educational andsocial, writing materials, guides to good practice, courses, curricula, etc.)and continuously updated knowledge of the role which the Ministry ofHealth has in connection with the activity;

Functioning: The group will meet quarterly (8 X two days meetingsper project) and will analyze situations presented by each member of thegroup, each member will propose measures and will be informing theMinistry of Health and other ministries involved in the management of rarediseases. The maximum number of group members is 20.

Budget: Each group member will have an allowance /meeting thatcover the costs of transportation, accommodation, meals. Also there will becovered the costs of communication in group, conference room formeetings, supplies, printings, publications, etc.


7/29


8/29

Ob.2. New services for rare

diseases in Romania a. Developing and implementing a training network

for professionals and staff involved in the diagnosis,treatment and rehabilitation of people with rarediseases.

Organizing workshops, seminars, and training on specificareas:

Selection of a training team of trainers;

Creating curricula on specific jobs involved in RD, ex:genetic councilor;

Performing trainings;

b. The creation ofaccredited online training

courses (eUniversity) about rare diseases forprofessionals: social workers, psychologists, nurses,teachers, doctors, etc.

Creating curricula for specific training themes;

Purchasing the necessary soft to perform this trainings;

Authorization/ accreditation the trainings;

Organizing the first training courses;


9/29

Training

Improving training capacity in the country for theprevention, diagnosis, treatment andrehabilitation of patients with rare diseases:

Rezults:

- a network of trainingspecialists and staff;

- accreditation / licensing of online courses (eUniversity)(on rare diseases, for professionals: social workers, psychologists,nurses, teachers, doctors, etc.)


10/29

The Pilot Reference Centerfor personalized

intervention for those affected by rare diseases

3 main components + 1 external unit: a day center for patients with rare diseases (having

behaviors on the autistic spectrum)

a comprehensive training program for patients, families,caretakers and specialists involved in the management of rarediseases (FRAMBU model)

patients newly diagnosedand their families (to learn tocope with new situations more easily)

The external unit: A weight management unitin the Rehabilitation Hospital

ACASA for patients with neuromotor deficiencies.

We will plan so that patients who come to our coursescan come before or after the period of the rehabilitationtreatment that they take part in at ACASA Hospital

In addition, we willhave a national database of patients,along with ACASA Hospital, with various diseases andbe actively monitoring their progress.


11/29

Ob.3 Shared best practice network

on RD (NoRo)

Organizing visits of the partners

Writing the final proposal of the project based on the best

practice of the partners and the shared values and experiences

in the field of RD

Organizing presentation of the projects results in the PW EEConference (April 2009 Romania), EURORDIS membership

meeting Greece 2009, IPWSO Conference Taiwan 2010, etc.

Permanent updating of the project results on the websites;

Writing articles in the newsletters and RD journals to promote

the projects results;


12/29

The space received from the City

Hall


13/29

The vision


14/29

The model


15/29

Achievements:

Relevant partnerships established during the seedmoney implementation;

Proper facilities for the new services;

Feasibility studies completed;

Grant offer letter signed;

A coordination team for the project implementationestablished at the Ministry of Health;

Official launching of the project at the 1st EasternEuropean Conference on PWS organized;

The first evaluation meeting of the potential membersof the RDTF at the conference in Timisoara;


16/29

Pilot Centre for Rare Diseases:

Idea of the Centre: A residential part:

To provide help for families after experience of

diagnosing a RD;A place to learn how to face the new situation

and to dial with the disease in their every day

life;

A place to organize meetings and trainings ofpatients;

Support groups and counseling activities for

patients and families;


17/29

Pilot Centre for Rare Diseases:

Hospitalization of the RD patients in ACASA hospital forrehabilitation;

Establishing a data base of patients that needsrehabilitation program in ACASA;

Specializing services of the center for RD patients:

weight management, individualized therapeuticallyapproach;

Day care activities:

Individualized therapeutically approach of autisticspectrum diseases;

Behavior intervention therapy;

Occupational Therapy and Educational activities;

Recreational activities;

Support groups and counseling activities;

Weight management


18/29

Main interventions of the project:

To develop skills to approach the RD for patients, professionals andparents;

To maintain and improve the mental and physical capabilities ofpatients through individualized therapeutically approach;

To improve understanding and support of community;

To create a data base of patients with RD;

To establish protocols of assistance and care for different RD;

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


19/29

Up to date results

23.10.2009 10.12.2009 Training for

personal assistants of people with severe

disabilities (first trainings, 41 personal

assistants from Crasna, and 25 from Balangraduated)

6 groups of patients / 75 patients included

in interdisciplinary recovery and intervention

program in ACASA Foundation (Multiple

Sclerosis, Prader Willi Syndrome, muscular

dystrophies and amyotrophic disorders).


20/29

19 children with rare diseases from

autistic spectrum included in personalized

therapy at the Information Center for Rare

Diseases. 10 issues printed of the magazine Rare

People and Rare Diseases


21/29

1 issue of the Journal of Rare Diseases,

dedicated to the Balkan Congress of Rare

Diseases Cluj-Napoca

Leaflets, flyers distributed through thenetwork of Info sanatate and with the

occasion of different events.

Printed curriculla (information support

material) for trainings;

Books for children;

Accredited trainings from MMSSF and CMR;


22/29

Developing the structure ofwww.edubolirare.ro.

Information materials are prepared by Prof. Dr. Maria

Puiu, Dr. Mihai Gafencu from UMFT, Cristina

Skrypnyk from Oradea + APWR team. The IT part is

made by Istvn Dombi and Camelia Arion.

Management plan for the renovation and expansion

of the building is approved by Innovation Norway, the

technical project is completed, the public

procurement process have been passed and thebuilding construction is under development.


23/29

We officially received the report of the visit

to Romania of the partners / specialists from

FRAMBU:

there was an overall positive assessment ofthe project, considering it necessary and

appropriate for patients with rare diseases

from Romania

The same opinion regarding our activity have

been received after the monitoring visit and

the first report.


24/29

they appreciated how many social and

medical functions are aligned and

harmonized in the future Center for rare

diseases technical design and architectural solution

have been assessed as representing a

harmonious combination between new and

old, approaching in a friendly way the socio-medical and educational complex


25/29

The project team decided to organize preparatory

meetings for the National Rare Diseases Task Force

meeting, to prepare the agenda and the materials

necessary for the committee's work, but also for

organizational development, "team building"

activities. The first meeting will be held in November.

Also, from the idea that the National Plan for Rare

Diseases is supposed to have the answer to the

needs of patients affected by rare diseases inRomania, we decided to organize workshops with

representatives of patients simultaneously with Rare

Diseases Task Force meetings.


26/29

the idea of e-learning and e-University for

rare diseases was considered as an

innovative concept

To increase the visibility of the project wemade a media communication strategy. It was

also decided that before the end of the year

we need a selection for a PR specialist, and

the acquiring of two infochiosks (one will beinstalled in Zalau City Hall and the other at

ACASA Foundation).


27/29

Analyzing the complexity of the project

activities and services that is going to be

developed in the Pilot Reference Center for

Rare Diseases, we resumed discussions onthe International Advisory Group, which

could come to support the team to develop

the services in the future centre.

Asked agreement of the partners on thisissue.


28/29

Knowing that this Advisory Group was not

included in the project, we were looking for

complementary funds for it's meetings (we

received financial support from theorganization Kindness forKinds from

Germany).

Advisory committee formed, first two

meetings have been organized;


29/29

Thank you!

dorica (noro) parternership for progress in

Documents