The Romanian Prader Willi Association (RPWA) manages the national Resource Centre for rare diseases in Romania – NoRo – created with the support of a Norwegian Grant and of a large Norwegian and Romanian partnership.
- Improve access to information on rare diseases;
- Create a national rare diseases database;
- Create a support network among patients living with the same disease as well as between professionals and families;
- Stimulate research in the management of rare diseases;
- Co-operation with international organisations and networks;
- Stimulate early diagnosis, disability prevention and management.
- For individual patients: information and advice to individual patient and/or caregivers, personalised therapeutic intervention;
- For groups of patients: information, advice and training to patients and carers, information and training to professionals;
- In the community: public awareness campaigns, information on risk and on prevention/limitation of the disabilities caused by rare diseases (e.g. neonatal screening), advocacy campaigns for a national strategy on rare diseases.
NoRo is accredited for providing social services, medical services, training for adults and research. The centre also runs a patient registry and a help line. The services of NoRo include:
- A day care centre providing therapies for children with rare diseases and autism spectrum disorders;
- A residential centre providing therapy and disease management training for groups of patients with rare diseases.
Role in project:
Implementation of the pilot of social service provision (WP6)
- Pilot Advisory Committee with representatives of services, users, local/regional authorities, Ministries of Social Affairs/Health, National Council for Rare Diseases (to ensure integration)
- Assessment of current service provision quality and organisation
- Implementation of good practices
- Training and employment of regional case handlers (pilot)
- Facilitation of pilot evaluation: identification of patients, questionnaire translation and dissemination