I HAVE A
RARE DISEASE

Most rare disease have no cure, and the drugs, when available, can be expensive, so living with a rare disease is an ongoing learning experience, both for patients and families. Contacting the rare disease help line and patient associations can help you clarify some doubts and reach out to other people that may suffer from the same disease.

People living with a rare disease are frequently faced with a critical lack of information and support. Consulting a reference center can help you attain specialized monitoring and detailed information on your condition.


Reference Centers in Portugal

Rare diseases Places of access to reference centers for rare diseases
Pediatric oncology IPO do Porto, EPE
Centro Hospitalar de S. João, EPE
Centro Hospitalar Universitário de Coimbra, EPE
IPO Lisboa, EPE
Centro Hospitalar Lisboa Central, EPE
Centro Hospitalar Lisboa Norte, EPE
Hereditary metabolism diseases (including lysosomal storage disorders) Centro Hospitalar do Porto, EPE
Centro Hospitalar de S. João, EPE
Centro Hospitalar Universitário de Coimbra, EPE
Centro Hospitalar Lisboa Central, EPE
Centro Hospitalar Lisboa Norte, EPE
Lysosomal storage disorders Hospital da Senhora da Oliveira Guimarães, EPE
Congenital coagulopathies Centro Hospitalar do Porto, EPE
Centro Hospitalar de S. João, EPE
Centro Hospitalar Universitário de Coimbra, EPE
Centro Hospitalar Lisboa Central, EPE
Centro Hospitalar Lisboa Norte, EPE
Cystic fibrosis Centro Hospitalar do Porto, EPE
Centro Hospitalar de S. João, EPE
Centro Hospitalar Universitário de Coimbra, EPE
Centro Hospitalar Lisboa Central, EPE
Centro Hospitalar Lisboa Norte, EPE
Familial amyloid polyneuropathy Centro Hospitalar do Porto, EPE
Centro Hospitalar Lisboa Norte, EPE
Refractory epilepsy Centro Hospitalar do Porto, EPE
Centro Hospitalar de S. João, EPE
Centro Hospitalar Universitário de Coimbra, EPE
Centro Hospitalar Lisboa Central. EPE
Centro Hospitalar Lisboa Norte EPE
Centro Hospitalar Lisboa Ocidental, EPE
Onco-ophthalmology Centro Hospitalar Universitário de Coimbra, EPE