Pan American Hereditary Ataxia
In March 2019, a group of ataxia investigators met in Havana and set out to launch a network called the Pan American Hereditary Ataxia Network (PAHAN).
PAHAN has immediate objectives: (i) to bring the scientific communities of the different countries of the American continents and the Caribbean closer together, so as to enable networks and multilateral studies dedicated to the ataxia field; (ii) to promote schools on Neurogenetics for students and health professionals from our countries; (iii) and to help the readiness of the ataxic populations from the American continents ad the Caribbean for clinical trials to come.
Hereditary ataxias are very rare conditions. Therefore, obtaining clear scientific evidence is difficult and requires either the formation of multicenter consortia or meta-analyzes. These difficulties need to be overcome in the face of the serious disabilities imposed by ataxia disorders. The influence of different genetic and ethnic backgrounds on clinical aspects of several diseases is a well recognized phenomenon in Medicine. This is an important reason for the present effort to aggregate data obtained from different American countries.
Our populations suffer from historical inequalities and difficulties in accessing health care. By pooling efforts from different researchers, PAHAN will help ensure that families and patients are more accessible to diagnosis, care and participation in future clinical trials.
In addition, by bringing together experienced researchers at scientific meetings, PAHAN will be able to offer continuing scientific education to healthcare professionals and students. A better network of ataxic assistance and scientific research could grow, with the support of our consortium.
PAHAN next meeting will take place on August 29, 2020, as a satellite event to the Brazilian Congress of Neurology (BCN) (from August 30 to September 2, 2020) in Gramado, Brazil. Scientific activities will be scheduled on this day. Operational meetings should also take place at independent times after August 30th, during BCN.
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January 27, 2020.