• Groups of patients from all over the country will attend training activities for 5 days, learning how to cope with their diseases;
• Groups of young adults with rare diseases (trial for flight) will come for consecutive weekends for training in “life skills”;
• Families with newly diagnosed children can also come to the center for a period time for assessment and training of the family;
• During family training, while the parents are in class, the children will be involved in therapeutic activities. We will also organize therapeutic activities in the afternoon for the young patients involved in training activities.

 The NoRo center will utilize The Norwegian Way of managing rare diseases. We will organize training courses on various rare diseases (ex. Prader Willi, Gaucher, Muscular Dystrophy, Hemophilia, OI, Williams,  Pompe, MPS, Werdnig Hoffman, Miastenia Gravis,etc.) or categories of diseases, according to the number of patients (ex. metabolic, endocrine, neurological, etc.).

The Norwegian experience have demonstrated that if the patients, families, caretakers and professionals involved are better trained the quality of life is improved for the patients and the costs for the state are less (less medicines used through a better cope with the situation and more efficient and timely intervention). Sharing knowledge and experience from the Prader Willi Association Norway and FRAMBU regarding organizing and management of such a competence centre will be a great resource for Romanian patients.

Step 1. Identification, evaluation, genetic counseling for those addressing to our services

Step 2. Acceptance in the center will be based on the number of vacancies, the conditions imposed by law on compliance with quality standards in the operation of these services and internal rules of organization and functioning for the center.

For a proper functioning of the services we conceive:

• Criteria for admission
• Contract for services agreed with the patient or the family.
• Individualized Care and Habilitation Plan for each beneficiaries.

During the project development, we have organized great activities for our beneficiaries. Both in the groups that attended rehabilitation at the Rehabilitation Centre ACASA, situated just outside Zalau, and the children involved the therapy at the Center for Information about rare genetic diseases.  

eUniversity

www.edubolirare.ro  is a part of the actual Center for Information about Rare Genetic Diseases. The E-University has an information part (available for the general public) and a training part (available only for those who register for training).   

• We will provide 3 types of training: face2face, online and blended learning courses (face2face + online), depending on the level of accreditation.  
•  We have accredited 6 different training courses

The management of rare diseases, addresses doctors, which is accredited by the Doctors Collegium with 18 credits for CME in online form. Training for socio-educative animators, rehabilitation teacher, art therapist, competence evaluators and personal assistant of disabled persons, accredited by the Ministry of Work & Education (addressed to personal assistants, social workers, psychologists, teachers, working with patients with RD). 

We hope that through this virtual platform we will offer quality training programs, presented in an attractive way, encouraging continue progress, lifelong learning and improvement of the skills needed for diagnosis and management of rare diseases. The main training method will be blended learning - a modern concept implemented in the Norwegian Centre for Integrated Care and Telemedicine from Tromso, which combines the classical learning method (face2face) and modern internet-based learning (e-learning).

That was another story with lots of challenges and efforts. First, we received the land through a partnership agreement from the Catholic Church „St. Family” Zalau. Then it was given back to the Local Council, who decided to give it to the RPWA (in accordance with the will of the church) to renovate and build the center for rare diseases, initially for 1 year, than 3 and finally for 10 years.

                Through this project we built TRUST and UNDERSTANDING…

We started with delays in the construction work due to the procurement methods and contestations, than we had floods, landslides, supplementary work for reinforcement of the land and many others... but, we overcome all these and succeeded in the end. Mainly because all the people involved: constructor, architect, authorities, staff and volunteers, all of them transformed this project in their main goal and all wanting this project to be an example... I would say that our belief became their belief, and this is fantastic.   

This project is important for rare diseases patients as it is valuing the everyday experience of patients and families. One of our main purposes is to implement training activities for the entire family and for the professionals involved in diagnosis and management of the rare diseases. Also, it will offer an important support to all the patients, not only to those who have an effective treatment but also for those who have no treatment for the moment (through therapies, training, counseling and support group activities).

Through this project we did not build only a „center” for rare diseases, but we built real partnership and trust among all the partners involved. The involvement of Frambu and PWA Norway is a model for the Romanian partners and this cooperation has influenced the support of the national authorities, too.