A new center dedicated to researching and treating rare neurological diseases is opening in Fortaleza, Brazil, offering hope for patients and families facing challenging diagnoses. The Centro de Neurodesenvolvimento em Doenças Raras (CEND), or Neurodevelopment Center for Rare Diseases, will be located within the Núcleo de Atenção Médica Integrada (Nami) on the Universidade de Fortaleza (Unifor) campus.
The center’s mission, according to the Fundação Edson Queiroz (FEQ), is to provide specialized, multidisciplinary care to children from gestation through age six with neurodevelopmental disorders and rare neurological conditions in the state of Ceará. This initiative aims to combine direct patient care with scientific research, addressing a critical need for specialized expertise in this area. Rare diseases often present diagnostic challenges, and this center seeks to accelerate the process of identifying and treating these conditions.
The unit will also focus on training healthcare professionals and developing research focused on early diagnosis in pregnant women, clinical management, and innovative therapies.
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The center will concentrate on rare diseases linked to brain development, explained Dr. Eduardo Jucá, a neuropediatrician and the center’s coordinator. “We are focused on the part of the nervous system associated with rare diseases and syndromes,” he said.
A key goal of the initiative is to support families who have struggled to obtain diagnoses. Dr. Jucá emphasized that the center aims to “shorten this journey and the path in search of answers and treatments.”
The World Health Organization (WHO) estimates that a disease is considered rare when it affects up to 65 people per 100,000 individuals.
Where will the Center be located?
The center will integrate existing rehabilitation services under a single operational structure to provide greater support to parents and guardians.
CEND will operate within the Nami facilities, located in the Edson Queiroz neighborhood. Nami is a recognized center for humanized care, offering services to the population through the Sistema Único de Saúde (SUS) – Brazil’s public health system – as well as through affordable fees and health insurance plans.
Initially, patient flow will be structured through referrals and strategic partnerships with other institutions.
Along with Nami, the center will provide a qualified multidisciplinary team and ultrasound services for early diagnosis. The FEQ will also offer exome sequencing, when requested, through partnerships with accredited laboratories.
The exome sequencing test is a highly complex genetic test performed on blood or saliva samples and is recommended for the diagnosis of genetic diseases that are difficult to identify or when previous tests are negative.
What are rare diseases?
Rare diseases affecting the nervous system can impair motor, sensory, and cognitive functions in children, impacting neurological development. Approximately 80% of rare diseases have a genetic origin and often manifest in childhood.
Conditions within the field of the nervous system and its formation include:
- agenesis of the corpus callosum;
- craniosynostoses;
- hydrocephalus;
- cerebral dysplasias;
- epileptic encephalopathies;
- neurodevelopmental disorders with a genetic basis.
These diseases frequently require ongoing monitoring and a multidisciplinary approach involving neurologists, geneticists, physiotherapists, speech therapists, psychologists, and other healthcare professionals. Early detection is therefore essential to ensure patients receive appropriate treatment as quickly as possible.
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Professional Training
“The inauguration of CEND represents a significant advancement in the care of people with alterations of the nervous system and with rare diseases and their families. We are investing not only in treatment, but also in research and training of specialists and researchers in neurodevelopment,” said Lenise Queiroz Rocha, president of the FEQ.
Dr. Eduardo Jucá also envisions the center as a “hub that encompasses this theme, because it ranges from bench research to diagnosis.” As part of the university’s tripartite mission, CEND will function as a hub for professional training, scientific research, and direct assistance.
The center’s future vision is to consolidate itself as a national reference, offering treatments ranging from rehabilitation to fetal interventions. The focus is to ensure rapid responses so that children can make the most of their early years.
For the neuropediatrician, the role of CEND is to allow the patient to “follow their trajectory developing the maximum of their potential.”
The inauguration ceremony will be held this Thursday, March 5, 2026, at 4:00 PM, with the presence of neuroscientist Miguel Nicolelis, as well as managers from the FEQ and Unifor.
