Project: Equitable Policies and Services for Rare Disease Patients
Duration: December 2014- June 2016
Donor: European Union
The Applicant: Association of Lawyers for Medical and Health Law of Serbia – SUPRAM
Partners: National Organization for Rare Diseases of Serbia – NORBS and Institute of molecular genetics and genetic engineering – IMGGE
About the project: The objective of the project is to enhance the position and combat discrimination of patients with rare diseases through supporting equitable policies and services for rare diseases patients. The action supports a more equitable health care and social security system.
Main expected results of the action are: in depth assessment of current discriminatory practices; formulation of recommendations for rare disease policies which transpose the European standards in policy and practice; public awareness campaigns; personal counseling services and empowerment for rare disease patients and their families.
The action consists of four types of activities:
1. Analysis of the current legal and societal position of patients with rare diseases and their families – which will include analysis regarding the provision of health and social care services, access to education, discrimination of rare disease patients, analysis regarding the reimbursement of services in Serbia and in cross-border settings and analysis of the current provision of counseling and the equitable distribution of services within the rare disease community;
2. Development a coherent policy proposals including the measures needed for its transposition in practice and developing of a strategy related to rare disease patients and further proposals for legal framework;
3. Strengthening the capacities in the field of counseling and knowledge transfer through empowering different stakeholders including the Public Health service to combat the discrimination of rare disease patients and to ensure their social inclusion, setting up a assistance contact point for rare diseases, counseling rare disease patients and their families, training law practitioners working in health area, with the emphasis on the rare diseases patients’ rights area, through seminars and workshops, including training one lawyer to become a law advisor at the National Organization for Rare Diseases of Serbia, supporting policy makers as needed and trainings for local / regional health authorities to better understand the rights and needs of rare disease patients;
4. Public awareness and empowerment through a public awareness campaign: TV, radio and printed media ad campaign; jumbo posters, leaflets and brochures to be distributed to healthcare institutions, creating a section at the National Organization for Rare Diseases of Serbia – NORBS website with easily accessible information about the patients’ rights for patients and families.
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