ПОСЛЕДНИ НОВИНИ

Mission

National Alliance of People with Rare Diseases works to achieve the following goals:

  • Protecting the rights of people with rare diseases
  • Establishing contacts and ongoing communication between Alliance and governmental institutions in Republic of Bulgaria, which are concerned with rare diseases (Ministry of Health, Ministry of Labour and Social Welfare, National Health Insurance Fund, Bulgarian Drug Agency, National Expert Medical Commission, etc.)
  • Raising awareness in society about rare disease specifics, prevention, diagnostics, treatment and rehabilitation, about their physiological and psychological effects.
  • Assistance, integration, encouragement and information of people with rare diseases and their adaptation to society.
  • Taking actions to overcome the emotional implications of the conditions. Vocational retraining and social rehabilitation of people with rare diseases.
  • Supporting the professional development and training of researchers and medical specialists related to prevention, diagnostics, treatment and in the field of rare diseases.
  • Promotion, assistance and development of rare disease scientific trials in Bulgaria and abroad.
  • Establishing contacts with similar organizations in the country and abroad.
  • Providing funding for treatment and assistance in Bulgaria or abroad to people with rare conditions.