National Plan for Rare Diseases 2014–2017 : Steering group report
sosiaali- ja terveysministeriö
13.03.2016
Julkaisusarja:
Raportteja ja muistioita 2015:43This publication is copyrighted. You may download, display and print it for Your own personal use. Commercial use is prohibited.
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http://urn.fi/URN:ISBN:978-952-00-3681-2Tiivistelmä
The steering group for rare diseases has prepared a proposal for a National Plan for Rare Diseases 2014–2017. Stakeholders had an opportunity to participate in the preparation of the plan. A key objective of the plan is that people with a rare disease can live a full life of their own choosing regardless of their disease and receive not only appropriate care and habilitation, but also psychosocial support indicated by their needs.
Finnish social and health care services do not currently provide a satisfactory response to the needs of patients with a rare disease. Due to the low prevalence of rare diseases and scarcity of relevant expertise, dedicated measures are needed in the service system to ensure equity of access to quality care and habilitation for people with a rare disease.
The National Plan contains proposals for actions aiming to develop research, care, habilitation and social support. As priority actions, the plan proposes acknowledging in statutes or in their rationale the need for dedicated measures targeted at rare diseases, clarifying the care pathway for people with a rare disease, establishing units for rare diseases in university hospitals, promoting the availability and reimbursement of orphan drugs, setting up a national coordinating centre for rare diseases, and developing social support and habilitation.
The plan's goals include empowering people with a rare disease, their families and patient organisations to participate in decision-making in the field of rare diseases and the planning of services. Patient organisations' opportunities for exerting influence must be improved at all levels of the service system.
Finnish social and health care services do not currently provide a satisfactory response to the needs of patients with a rare disease. Due to the low prevalence of rare diseases and scarcity of relevant expertise, dedicated measures are needed in the service system to ensure equity of access to quality care and habilitation for people with a rare disease.
The National Plan contains proposals for actions aiming to develop research, care, habilitation and social support. As priority actions, the plan proposes acknowledging in statutes or in their rationale the need for dedicated measures targeted at rare diseases, clarifying the care pathway for people with a rare disease, establishing units for rare diseases in university hospitals, promoting the availability and reimbursement of orphan drugs, setting up a national coordinating centre for rare diseases, and developing social support and habilitation.
The plan's goals include empowering people with a rare disease, their families and patient organisations to participate in decision-making in the field of rare diseases and the planning of services. Patient organisations' opportunities for exerting influence must be improved at all levels of the service system.