INNOVCare logo
Bridging the gaps between health, social and local services to improve care
of people living with rare and complex conditions
  • Home
  • Who we are
  • What we do
  • Why we do it
  • Social Services
  • Events
  • Resources

Romania Prader Willi Association, Romania

Logo Romanian Prader Willi Association

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.

 

Main objectives:

  • 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.

 

Main activities:

  • 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.

 

Key contact:

Dorica Dan

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

All the partners

Ministry of Health, Consumer Affairs and Social Welfare
Spain
Salaj County
Romania
EURORDIS – Rare Diseases Europe
France
FINOVATIS
France
Inštitut za Ekonomska Raziskovanja
Slovenia
Karolinska Institutet
Sweden
Romania Prader Willi Association
Romania
Zentrum für Soziale Innovation
Austria

  • Home
  • Who we are
  • What we do
  • Why we do it
  • Social Services
  • Events
  • Resources
This project is co-funded by
the European Union
Contact us
The information contained in this publication does not necessarily reflect the official position of the European Commission.