NEUROFIBROMATOSIS AWARENESS & EDUCATION IN BRAZIL
BACKGROUND & PURPOSE
Neurofibromatosis (NF) is a ubiquitous disease, but patients from developing countries tend to suffer more due to lack of resources and expertise. Much progress has been made in management of NF in the recent years, especially with advances in Neuro-Oncology and Neuroimaging. Still, than are approximately 80,000 Brazilians with NF but very few health professionals with expertise in treating the condition.
In Brazil, a pioneer work has been done by AMANF, a local association of patients with Neurofibromatosis. Through a long-established partnership with expert providers, including Dr. Nikolas Mata-Machado of UIC, the group has published guidelines to engage patients, developed a blog and spread awareness of this condition in Brazil using different media formats.
Additionally, the partnership is working to improve the section on neurology the Brazilian Blackbook of Pediatrics (the most utilized pediatric textbook in Brazil). This textbook is an invaluable tool for physicians to use in diverse settings.
PROGRESS TO DATE – LITERATURE
- Figueiredo, A. C.; Mata-Machado, N.; McCoyd, M.; Biller: Neurocutaneous Disorders for the Practicing Neurologist: a Focused Review. Current neurology and neuroscience reports(2016) DOI: 10.1007/s11910-015-0612-7
- Batista, P. B.; Bertollo, E. M.; Costa Dde, S.; Eliam, L.; Cunha, K. S.; Cunha-Melo, J. R.; Darrigo Junior, L. G.; Geller, M.; Gianordoli-Nascimento, I. F.; Madeira, L. G.; Mendes, H. M.; Miranda, D. M.; Mata-Machado, N.; Morato, E. G.; Pavarino, E. C.; Pereira, L. B.; Rezende, N. A.; Rodrigues Lde, O.; Sette, J. B.: Neurofibromatosis: part 2 – clinical management. Arquivos de Neuro-Psiquiatria (2015) DOI: 10.1590/0004-282X20150042
- Epilepsy in Children: Mata-Machado,N: . In: black book pediatric manual, editor. Blackbook editora. Belo Horizonte (Brazil) ISBN: 9788599130070
- Headache in Children: Mata-Machado,N: . In: black book pediatric manual, editor. Blackbook editora. Belo Horizonte (Brazil) In press
Nikolas Mata-Machado MD
Assistant Professor of Pediatrics in Neurology
Associate Medical Director of Child and Youth Center
Director of Neurofibromatosis Clinic