Participation of family as a stakeholder in the process of informing patients with rare diseases

General Medicine, 2024, 26(2), 39-43.

M. Yordanova

Department of Health Economics and Management, Medical University “Prof. Dr. Paraskev Stoyanov” ‒ Varna

Abstract. Due to the specificity of the diseases, the community is faced with specific challenges. Limited awareness, scarce medical expertise, the unpredictability of manifested symptoms, problems in developing treatments for any disease, or the overall lack of available ones, turn the family of the diagnosed into a stakeholder in raising awareness in the field. The key actions to improve the level of data available to patients with rare diseases are aimed at direct, targeted and in-depth communication between stakeholders. Health literacy, experience and goals set for progress in the field of this type of disease support the collection of up-to-date data, and their dissemination to a larger audience allows for timely diagnosis, strengthening of promotion and prevention, and informed patient treatment choices.

Key words: family, stakeholders, rare diseases, patient awareness, health literacy

Address for correspondence: M. Yordanova, e-mail: yordanova250@gmail.com