Linha Rara's services were created for you! Whether you are a patient, family member, friend, health professional or social worker, teacher, student or simply curious, Linha Rara will provide you with answers according to your needs.
This project presents different lines of action under the scope of dissemination of information on rare diseases, the promotion of rights and the improvement of the patients’ quality of life:
- Information: personalised information on rare diseases, medical centres/follow-up medical specialties, scientific/therapeutic advances, technical/social support and contacts of Portuguese and/or foreign associations working on these rare diseases;
- Promotion of Patient Communities: with a view to reducing the sense of isolation and creating the possibility of sharing experiences;
- Health Education: development of education sessions and information support material within the scope of rare diseases and associated theme.
With these three areas of action, Linha Rara aims to meet the objectives presented in the National Programme for Rare Diseases (PNDR) of 12 November 2008.
Nature of the Services
Linha Rara is an information service and not a medical consultation platform. Therefore, this service is not intended to replace the essential activity of health professionals and resulting clinical opinion from specialists that directly accompany patients and know their medical history.
Linha Rara does not provide diagnosis and/or prognosis services, seeking in such cases to promote further referral to competent institutions/specialists within the healthcare services.
Linha Rara is driven by a demand for respect of principles relating to the ethics of medical information. Thus, the platform services are provided with seriousness, loyalty, clarity and relevance. The information is collected in the interest of the applicants and depending on their situation and needs.