Official title of the project

Equitable Policies and Services for Rare Disease Patients

Sectors

Project information

Subtitle
CIVIL SOCIETY FACILITY PROGRAMME 2013 Theme 2: Antidiscrimination
Region / City
Cities
Serbia
Total budget of programme / project

112,754.39 EUR 

Implementation period
2014. Nov - 2016. May
Expected results
  1. The proposed action will produce an in-depth analysis of current discriminatory practices towards the patients with rare diseases. Upon the results of the research, standards will be developed for provision of services for persons living with rare diseases as to eliminate discrimination towards them. These standards will be aimed at services in health, education and social care systems. Policy guidelines for the conduct of relevant stakeholders, will be developed as to achieve elimination of discrimination through improved policies. Standards and policy guidelines will be implemented through the Strategy on the rare diseases for Serbia which is expected to be drafted by the Ministry of Health Working group and proposed for adoption during the project period.
  2. Capacity building of the action will include both: 1. Healthcare professionals and 2. Lawyers working with patients with rare diseases through tailor designed training sessions. The trainings will be conducted with health professionals, including staff from all levels of healthcare and staff relevant for budgeting of health services. It will also include lawyers working as Councillors for patient’s rights (within local municipalities in Serbia), members of Local Health Councils and legal practitioners working in civil society organizations providing free legal aid to persons in need. In total six trainings will be held in three major clinical, legal and academic Serbian centres (Belgrade, Novi Sad and Niš). Trainings are envisaged for 15-20 professionals, which would lead to 90-120 members of target groups covered through this capacity building and will significantly contribute to improvement of access to services and elimination of discrimination throughout Serbia. The action will also result in development of counselling services for the patients with rare diseases which will be aimed to continue beyond the completion of the project. One junior lawyer will be specially trained by Health Law experts (including Attorneys of Law) – members of SUPRAM as to provide a free legal aid to patients with rare diseases, including aid in drafting and submitting actions, petitions, requests to the administrative, healthcare, court and other relevant bodies.

  3. Action is aiming to increase awareness on rare diseases among both decision makers and general public. In addition to policy guidelines, which will be produced upon research, and education for healthcare professionals, the awareness raising campaign will be initiated as to bring the spotlight on this important societal problem. The project assumes the importance of health care system, social security system and educational institutions in developing non-discriminative policies for patients with rare diseases and will therefore contribute to achieving the higher level of sensitivity towards rare disease patients within these sectors.

Beneficiary

All citizens of Serbia as potential rare disease patients and particularly patients with rare diseases and members of their families through reduced discriminatory practices.

Partners
  1. National Organisation for Rare Diseases - NORBS  (RS)
  2. Institute of molecular genetics and genetic engineering IMGGE (RS)

Programme/Project objectives

Project will assess the current discriminatory practice toward rare disease patients, develop consistent and coherent policies (including the policies needed for the implementation) and will assure the implementation by setting up assistance contact point for patients, providing counselling service, setting up a web portal and by raising public awareness through a campaign.