The event is part of the calendar of initiatives related to the World Day for Rare Diseases. All activities will be directed to patients, families, health professionals and the community in general, where they will be discussed from diagnosis to multiprofessional treatment.
Rare Disease Day, created in 2008 by Eurordis (European Organization for Rare Diseases), is marked by a series of activities carried out by patient associations in more than 70 countries. All activities aim to sensitize society, government, educators, healthcare professionals, researchers and industries to the challenges that patients with rare diseases face.
In 2016, the theme will be “ Voice of the Patient ”, and in Brasilia the I Journey of Rare Diseases will be held, from February 16 to 18, 2016, organized by the Instituto Alta Complexidade Politica & Saúde and the Observatory of Rare Diseases of the University of Brasília . The activities will address issues of high complexity in health aimed at people with rare diseases, from diagnosis to multiprofessional treatment.
Holding the Conference in Brasília is important because some hospitals already provide care to patients with rare diseases, but still with incompatible structures for the growing number of patients. It is necessary to know and disseminate information about what is being done in several cities in Brazil, the event will be a tool for multiplying successful examples in patient care.
In this perspective, the I Journey on Rare Diseases will address the Rare Disease Policy created by the Ministry of Health (Ordinance N°199/2014), for the reality of patients, professionals, families and society. Awareness of rare diseases must be permanent considering the large number of patients in Brazil and the level of complexity involved in caring for patients and their families.
The I Journey of Rare Diseases will have a series of lectures and laboratories with specialists from the Federal District and other states, in addition to the official launch of the Raras.Net application. The initiative has the support of the Regional Council of Physiotherapy and Occupational Therapy of the 11th Region and FTR Physiotherapy and Speech Therapy.