The Program was instituted by Municipal Law 17,083 of 2019 and is in the implementation phase. It has the following objectives:
– Develop a line of care for people with rare diseases;
– Promote the examination for diagnosis and treatment as early as possible in all units of the Municipal Public Health Network, respecting the instances of federative entities and their respective competencies;
– Use information and monitoring systems by the Government of all who have been diagnosed with a rare disease, for the preparation of a specific register of these people;
– To establish in the Municipal Plan of Permanent Education (PLAMEP) qualification courses for public network professionals and internship programs in specialized services for rare diseases;
– Establish a psychological support network for patients and their families;
– Optimize relations between public and private technical areas in order to enable the widest exchange of information between health professionals, with patients, family members, and representatives of associations of people with disabilities diseases;
– And develop awareness campaigns for the population on rare diseases, especially on the symptoms, treatment and on the places of care for information and forwarding.
Support Program for People with Rare Diseases, and their families
Official Name of Signatory
City of Sao Paulo
Delegation
Brazil
Website of the Signatory
Name of the person presenting the Good Practice
Lucas Roberto Paredes Santos
Position/Job Title of person presenting the Good Practice
Assessor International Relations
Aim of the Good Practice
Reduce mortality, contribute to the reduction of morbidity and mortality and secondary manifestations and the improvement of people's quality of life, through actions of promotion, prevention, early detection, timely treatment, reduction of disability and palliative care.
Target Group of the Good Practice
People with rare diseases and their family members
Implementation period
Continuous action
Consistency over time
Continuous action
Evaluation of the Good Practice
It is carried out by the responsible Technical Area, but the office monitors the implementation of new actions through the SUS management instruments, such as the Annual Management Report
Key stakeholders and partnerships
Regional Health Coordinations, Health Units and Technical Area of Rare Diseases of the Ministry of Health