Learning from each other across Europe
Norwegian-Romanian (NoRo) Partnership for Progress in Rare Diseases
After three years of intense work a new service for Romanian rare disease patients is set to open in June 2011. The pilot Centre for Rare Diseases and virtual Rare Disease Training E-University is the first of its kind in Romania and will encompass a day centre for rare disease patients with autistic behaviour, a respite care service and a comprehensive training programme.
“The project is important for rare disease patients as it is intended to train them and their families to manage their own diseases, as well as train professionals involved in the diagnosis and management of rare diseases,” explains Dorica Dan, President of the Romanian Rare Disease National Alliance (Boli Rare Romania) and the main instigator of the project. “It will offer support to all patients, not only those who have treatment, through therapy, counselling and support group activities.”
The day centre, which is located in Zalau, near the city of Cluj Napoca in the north-western part of the country, offers specific interventions for children with autism in the form of physical, educational and behavioural therapies, as well as recreational activities. The pilot Reference Centre also has residential facilities where adults with rare diseases can attend "life skills" training over several consecutive weekends, and families with newly diagnosed children can spend up to a week attending meetings and lectures to learn ways of coping with the disease in their daily lives. The day centre will be open mostly to children from Zalau and the surrounding areas. The training activities will be open to patients and families from all over the country.
Apart from offering direct services to patients, the project also aims to provide information and training for doctors, nurses, social workers, psychologists, teachers and others involved in the diagnosis, treatment and rehabilitation of people living with rare diseases. The virtual Rare Disease Training E-University is accessible to the general public at www.edubolirare.ro and will include an ‘Intranet’ section, accessible only to registered users, offering face-to-face and online training courses.
The online courses are approved by the Ministry of Labour and Ministry of Education. To date there are six separate online training courses: for socio- educative professionals, rehabilitation professionals, art therapists, competence evaluators and careworkers for the disabled, plus a degree in Management of Rare Diseases, which is accredited by the College of Romanian Doctors.
The training method combines classic face-to-face learning with e-learning techniques, a modern concept developed at the University of Tromso in Norway. The final exams include practical and theoretical assessment. The practical assessment is carried out through partners located in various areas of Romania. The evaluation of students will be conducted by a special commission appointed by the Ministry of Education and Ministry of Labour. A demo for each course is accessible free of charge, the remaining fee is covered by participants.
“This is perhaps the most innovative side of the project,” argues Dorica Dan. “We hope that through the virtual platform we can offer quality training programmes presented in an attractive way to encourage continuous progress and lifelong learning, in order to improve the skills needed for diagnosis and management of rare diseases.”
The E-University is part of the Norwegian-Romanian Partnership for Progress in Rare Diseases (NoRo), a three-year project with the objective of providing more training on rare diseases for professionals in Romania. The pilot Centre for Rare Diseases is the result of a partnership between the Romanian and Norwegian Prader Willi patient organisations, together with the Norwegian Resource Centre for Rare Disorders (Frambu) and is supported through a grant from Norway via the Norwegian Cooperation Programme for Economic Growth and Sustainable Development with Romania.
“The Norwegian experience has demonstrated that if patients, families, careworkers and professionals are better trained, quality of life is improved for patients and cost is reduced for the state (fewer medicines due to better mechanisms for dealing with the disease and more efficient and timely intervention),” explains Lisen Mohr Consultant in Communication and Documentation at the Frambu Resource Centre for Rare Disorders.
The centre will benefit from experience gained by Norwegian patients in tackling rare diseases. Frambu has contributed much of its expertise and know-how in the design of the training courses. Prader Willi Norway and Frambu have also been a great resource in respect of the organisation and management of this kind of competence centre. The regional authority where the centre is located is covering the running costs and operational costs of the centre, including staff.
“Through this project we did not build just a centre for rare diseases, we built a real partnership and trust amongst all partners involved” concludes Dorica Dan. “The involvement of Frambu and PWA Norway is a model for all Romanian partners and has also influenced the support of national authorities.”
For more information:
Information courses planned for 2011 at the new Centre (in Romanian)
Romanian Prader Willi Association Guide of Services (in English)
Blog posts on the project
This article was first published in the June 2011 issue of the EURORDIS newsletter
Author: Paloma Tejada
Photo credits: © APWRomania & Boli Rare Romania