What kind of support can I get from Linha Rara?
Linha Rara is here to listen, inform and advise with regard to rare diseases and the rights of people suffering from them. The project provides personalised information on rare diseases, medical supervision specialities and institutions, scientific and therapeutic advances, technical and social support, and contacts of Portuguese and/or foreign associations that work with these rare diseases.
Additionally, this platform aims to promote the creation of Patient Communities that allow the reduction of the sense of isolation and enable the sharing of experiences between patients/families.
Linha Rara is an information and advice service and not a medical consultation platform. This service is not intended to replace the essential clinical opinion of the health professionals who directly accompany the patient and have knowledge of their medical history. Therefore, Linha Rara Line does not provide diagnosis and/or prognosis services, seeking in such cases to promote further referral to the competent institutions/specialists within the healthcare services.
How can I contact Linha Rara?
What is the average response time of the service?
Linha Rara processes the replies in the order of arrival of request, with an average response time of up to three working days, for less complex requests, and up to fifteen working days for requests involving obtaining opinions from external entities outside the service.
The disease that I am looking for is not listed in the "A to Z" section. Perhaps it is not rare?
Rare diseases are all those that affect less than 1 in 2,000 people altogether affecting about 6% of the population. There are between 5,000 and 8,000 distinct rare diseases. Compiling reference information about each of these diseases is an arduous task and a major challenge which Linha Rara is prepared to take on. Given the amount of rare diseases that exist, the platform will gradually include more and more diseases in its lists. If you cannot find the disease you are looking for in the “A to Z” list, please contact Linha Rara. Our information and support service will be happy to locate information about the diseases and confirm whether or not it is a rare disease.
Where can I obtain more information about Raríssimas?
Are there other entities that work with rare diseases in Portugal and abroad?
FEDRA – the Portuguese Federation of Rare Diseases, of which Raríssimas is part, is the Portuguese entity created with the principal aim of representing the various organisations in the country for people suffering from rare diseases. FEDRA operates primarily at the level of public administration with regard to policies relating to rare diseases, the acquisition and reimbursement of orphan medicines, the search of an epidemiological database register of patients with rare diseases, as well as legal representation at international organisations which share the same objectives.
At European level, there are two other reference entities: EURORDIS and ORPHANET. EURORDIS is a non-governmental alliance centred on the patient and works towards improving the quality of life of all people living with rare diseases in Europe. As for the European Portal for Rare Diseases and Orphan Drugs, ORPHANET, it presents reference information with regard to rare pathologies and associated therapies.The National Organisation for Rare Disorders - NORD, located in the United States of America, is another entity that works to support people suffering from rare diseases and patient associations. Its site also contains reference information about other rare diseases.
There are hundreds of associations that work with specific rare diseases. To obtain the most appropriate contacts for your case, please contact Linha Rara.
You can find additional information about the above institutions at the following addresses:
http://www.fedra.pt - FEDRA
http://www.eurordis.org/ - EURORDIS
http://www.orpha.net - ORPHANET
http://www.rarediseases.org - NORD